Abigail Erin

One year today

2008-03-08T10:01:00.003Z

Unbelievably, it's a year today since Abigail died. It will be a difficult weekend, of course, but for us it's just a date and we'll be spending some time together as a family today. We'll be using her birthday anniversary in September much more to celebrate her life, rather than commemorating her death. Of course there have been many memories brought back over recent days of what was happening a year ago when Abby was in hospital: the decisions made, the unfolding of events and how we were feeling then. But now as then, we remain so enriched, blessed and grateful for the experience of caring for Abigail Erin. Whilst tragedy and heartache was never far away, Abby will always be a highlight of all our lives.

Abby, you have your brighter day. We'll see you soon. xxxx

Running the marathon for Evelina

2008-01-31T10:55:00.000Z

Matt's sister Kerry is running the marathon again this year and raising money for the Evelina Children's Hospital at Waterloo where Abby was cared for in her last days. This is a tremendously arduous race but Kerry wants to run in memory of Abigail and also to raise much needed funds for new equipment at Evelina. She takes up the story:

In February 2007 Abby contracted Chicken Pox Pneumonitis which very sadly she never recovered from and on March 8th she died peacefully. The last two weeks of her life were spent at the Evelina Children's Hospital in Waterloo, London, where she received outstanding care. So, the reason I am running this gruelling race yet again is in Abby's memory and to raise money for Evelina so the outstanding care can go on.

Donating through JustGiving is simple, fast and totally secure. It is also the most efficient way to sponsor me: Evelina Children's Hospital Appeal will receive your money faster and, if you are a taxpayer, an extra 28% in tax will be added to your gift at no cost to you.

Please do visit her JustGiving page to donate to her total, find out how her training is going and then come along on the day to cheer her on!

First donation money goes to Demelza

2007-11-26T22:59:00.000Z

Yesterday we visited the Demelza House Children's Hospice in Sittingbourne, Kent, for a special remembrance service in the beautiful chapel there. It's held just before Christmas each year for families associated with Demelza who've suffered the loss of a child. It was a lovely service with plenty of time for reflection, and the many siblings and other children there were really included too. The care we continue to receive by this wonderful organisation is second to none.

Whilst we were there we presented the first cheque from Abigail's memorial fund, which many of you were kind enough to contribute to. £1425 was given to Demelza and two more sums of a similar amount will be donated to the other charities Abby's fund will support: the Phoenix Centre Pre-School and The Evelina Children's Hospital. We're thrilled the money that so many generous friends and family have donated to will go to help other children and families in situations like ours. Thank you once again.

Abby's donation fund to close

2007-11-12T08:39:00.000Z

This month we'll finally be closing Abigail's memorial donation fund, with the total (including recent interest from the bank) now at an incredible £4124. Thank you so much to everyone who very generously donated - we are really touched. This means that Demelza House Children's Hospice, the Phoenix Centre Pre-School and The Evelina Children's Hospital will each receive around £1375, which is superb. Thank you again, and we'll post here with news and photos when we visit each place to present the donations.

Classic pic: Nix and Abby in France

2007-07-15T07:55:00.000Z

This classic photograph was taken in August 2006 when we were holidaying in France. Many of you will know that ladybirds seemed to become synonymous with Abby for us as a family. This was because what little vision she did have was stimulated by strong, bold colours like red, white and black, and we'd planned to decorate her bedroom with a ladybird theme. On the holiday park where we were staying there was one of those old slot machines where you put some coins in and try to grab a prize with a small crane. After a few attempts, we managed to get the soft ladybird toy that Nix is giving to Abby here. Abigail was just short of three years old here.

Classic pic: Abby and Kitty

2007-05-09T09:00:00.000Z

This week's classic photo was taken on Boxing Day, December 26th 2005. We'd popped in to our friends Martin and Rachel's house and whilst we were there snapped this pic of Abby and her friend Kitty on the sofa. The two girls were born just weeks apart but of course with very different outcomes. Parental hopes of a lifelong friendship between Abby and Kitty initially seemed to have been dashed, but actually that's exactly what happened. Kitty really took to Abigail. This photo, when both girls were around two years and three months old, is a lovely reminder of that unspoken spark between them.

2003/04 updates complete

2007-04-21T10:10:00.000Z

We've now begun adding the very first updates on Abigail's condition that we sent shortly after her birth. Many of you will know there was a rapidly growing list of people who received email updates about how Abby was doing. Eventually we plan to backdate this website with all of those posts, so that this site becomes the complete story of her life.

The posts will be added verbatim as they were originally written and reflect what we knew and how we were feeling at the time. To view this archive, simply scroll down this page and find the Archives section on the right hand side, then click on the month of your choice to see updates from that time. We've now completed the addition of all updates from Abby's birth through September, October, November and December 2003, and on to January, February, March, April, May, June and July 2004 when she finally came home after nine months in and out of hospital. Looking back, they were very difficult days indeed! Don't forget that the earliest posts will be at the bottom of the page.

Classic pic: In the garden

2007-04-18T08:14:00.000Z

This week's classic photo is a picture we took of Abby when the kids were enjoying the sunshine in the garden at our old house one summer's day. It was taken on the afternoon of 8th June 2004 so Abigail was nine months old. The photograph is significant because it was taken in the very short six week period after Abby had at last come home from hospital but before she went back in due to epileptic seizures.

She'd just been discharged from Guy's hospital PICU after her gastrostomy operation and subsequent seizure episode. We had her home for just a month and a half before she was re-admitted to our local hospital with more epileptic episodes. This was finally brought under control after a week and she came home again on 23rd June that year.

Although it was really only a recent addition, it seems strange looking back at older pictures of Abby where she didn't have her trademark long curly locks!

Classic pic: Disneyland

2007-04-05T21:40:00.000Z

Clearly this blog will no longer have regular updates on Abby's progress as it once did, but we want to continue adding to the site long term. We intend to post more archived copies of older e-mail updates so that in time, the site becomes a place where Abigail's story can be told, right from the very first update sent three days after her traumatic birth.

In the short term we also want to keep you up to date with Abby's donation fund total and where and how that money will be donated and used. There may also be additional written and audio pieces from the recent Service of Thanksgiving, which astonishingly, was over two weeks ago already!

Finally, we'd also like to add occasionally to the site by posting some of our favourite photographs of Abigail along with a bit about where and when they were taken. Many people have commented on the two videos of Abby and how good it was to see her experiencing so many different people, places and situations. We wanted to show some more of those pics! Here's the first:

This photograph was taken on the morning of 1st September 2005 during our first trip to Disneyland whilst away in France. This was our first family holiday abroad with Abigail and the kids all loved the theme park. Abby particularly enjoyed this little boat trip and really seemed to take in the lights and sounds of many of the rides. She was nearly two years old in this shot.

Donation fund exceeds £3000

2007-04-03T08:59:00.000Z

Abigail's donation fund which will support Demelza House Children's Hospice, the Phoenix Centre Pre-School and The Evelina Children's Hospital has exceeded £3000 in donated or pledged money. Thank you so much to everyone who has generously given to Abby's memory. The fund is still open for the moment, but eventually donations will be split evenly between the three worthy causes.

Jon Snow on Abby

2007-03-26T21:57:00.000Z

Many of you will know that Matt works for ITN and we were delighted that so many friends and colleagues from the television news provider were able to journey down to Chislehurst for the Service of Thanksgiving last week. Some of the studio crew from Channel 4 News were among them including its main presenter, the wonderful Jon Snow. Jon was kind enough to write about his experience of Abigail and the funeral in The Sunday Observer this week and also devoted his short Snowmail programme on More4 on Saturday to her. We're grateful for your kind words, Jon, and glad that you got to meet Abby when she visited the newsroom last year!

You can read Jon's diary from last week (including the funeral on Tuesday) here, or listen to Jon's experience of Abigail in his Snowmail audio podcast here. Alternatively, you can watch the edition of Snowmail below. We're grateful to the More4 and Channel 4 news teams for allowing us to reproduce the programme here.

Welcome to Holland

2007-03-26T09:43:00.000Z

This is the piece that Mary Nightingale read out at the Service of Thanksgiving, which really sets the scene of what it's like to have a child with a disability. It was originally written some twenty years ago.

WELCOME TO HOLLAND
By Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous holiday trip – to Italy. You buy lots of guide books and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, go away, because the loss of that dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.
©1987 Emily Perl Kingsley

Photos from the service

2007-03-25T15:00:00.000Z

Here are a few pictures from the Service of Thanksgiving last Tuesday plus a photo from the cemetery.

Abby's Story (Part I)

2007-03-22T13:53:00.000Z

Here is the text of what Matt said at Abby's Service of Thanksgiving before showing the original Honest Questions About Abby video and collection of photos. The video features Daniel Bedingfield's beautiful song Honest Questions which has helped us enormously in coming to terms with Abby's condition.

As most of you will know, Abby’s story started in September 2003 when she was born by emergency caesarean-section after difficulties in the womb. She spent a month in special care, where it was discovered she'd suffered "catastrophic" brain damage due to a lack of oxygen before birth. Abby was in hospital for the first nine months of her life and nearly died on several occasions.

When she finally came home to be with us as a family, we had to get to grips with a very different kind of parenting. Abby suffered from severe cerebral palsy, severe epilepsy, had very little control of her limbs and was nearly completely blind. Doctors said she may live for twenty years or "she may not make her first birthday".

In January 2005, Abby defied the doctors’ worst prognosis and reached sixteen months old. During that time, Nix and I had struggled a great deal in coming to terms with Abigail's condition. We had many questions about what had happened, what could’ve been, and how to reconcile our faith through it all. Some of those questions will remain unanswered until we too get to heaven.

Two years ago we collected a series of photographs from Abby's life and made it into a DVD. It depicts a journey from those awful early months through to happier times at home with us. We wanted to show that although Abby's overall prognosis remained very bleak, we had begun to see some "brighter days".

The video is a testament to how far we’d come as a family in that first year and a half. A testament to how far Abby had come. So this is part one of her story. These were our ‘Honest Questions’.

Abby's Story (Part II)

2007-03-22T12:54:00.000Z

Here's what Nix said at the Service of Thanksgiving before introducing the second collection of photographs from Abigail's life and the You Say It Best video. It features the Ronan Keating song When You Say Nothing At All.

When Abigail was born three and a half years ago, our lives were turned upside down and indelibly marked forever. We had chosen the name Abigail because of its meaning, “Father’s delight”, but the first nine months were anything but delightful.

In those early months our one aim was to get Abby home – to live with her as part of our family and to make memories. And, as you’ve seen, we did that. Abigail became an integral part of our family. We learned to adapt to her needs and though her care was not always straightforward it was never a chore, because Abby made it easy.

Abby needed much, but demanded little. She had a presence that could not be ignored; she engaged people. Since her death many people have said how privileged they were to have met Abby, yet she could not see or talk or reach out and touch people, but she communicated in a way that is unexplainable.

It was our privilege to be given the task of parenting her. She has taught us so much. We know what it’s like to love utterly, without conditions, and we’ve experienced at first hand the good in people. We’ve come to know many people who selflessly spend their lives trying to make the world better for people who can’t do it for themselves. To have experienced that has been a life-enhancing journey.

Our lives will never be the same; the Abby-shaped hole in our hearts will always remain, but we’re grateful that we shared three and a half years with our very special daughter: Abigail Erin – the “Father’s Delight” who communicated so much without saying a single word.

Abby's funeral plus flowers and donations

2007-03-13T12:05:00.001Z

We'd like to ask that people don't give flowers on the day of Abby's funeral, but if they'd like to, make a charitable donation instead to a central fund in Abigail's name. The money raised will then be divided between three very worthy causes that were an integral part of Abby's life and are close to our hearts. These are Demelza House Children's Hospice in Sittingbourne, the Phoenix Centre Pre-School in Bromley and The Evelina Children's Hospital in central London.

We are very keen that nobody feels obliged to give anything, but we have had some requests asking where people may make a donation. If you feel that's something you'd like to do, then please email us for the account details and how to give.

Abigail Erin Freestone

2007-03-08T09:00:00.001Z

16th September 2003 - 8th March 2007

We want to share the news that our beautiful daughter Abigail Erin died peacefully in our arms at a little after midnight last night. We're so grateful that she passed away quickly and quietly after being extubated from the ventilator - she simply fell asleep in our arms. We will forever cherish the time we had with her and the enormous privilege we had to be parents to her. There will always be an Abby-shaped hole in our hearts and family, but her memory, love and character will live on amongst us and we're sure, many of you too.

The prayers, messages, e-mails, texts, phone calls, and practical help offered by countless people over these last three and a half years is a humbling testament to the power of good and friendship in the people who know and love us. Thank you, from the bottom of our hearts. We simply could not have got through it without you.

"Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me."

Love and blessings,

Matt, Nix, Becky and Josh Freestone

Abby this evening

2007-03-07T21:22:00.001Z

We're very aware that so many people have been accessing the website today for news of Abby. We're sorry that there has been no news until now. It's been a long and difficult day, but I don't propose to give every detail now.

After talking to the consultant at lunchtime today, it was clear that Abby has been deteriorating over the last few days. A further chest x-ray this morning showed that Abby's damaged lungs have got even worse and are beyond repair. Tonight, as I write this from the computer at Abigail's bedside, we are entering the final hours of her beautiful, strong-willed, love-giving and yet difficult and eventful life.

She is very comfortable but fading now. Friends and family have been visiting and Abby has had lots of lovely cuddles. She's very settled indeed and very peaceful. We are both spending the night here at the hospital and we will update here soon. We're so incredibly grateful for the love and support of so many people.

Overnight and this morning

2007-03-07T08:16:00.000Z

I'm afraid Abigail hasn't had a good night and it looks likely that she's beginning to deteriorate. Nix was called and went up to the unit to see her at about 2.30am this morning. Abby had suffered some more episodes of very low heart rate and desaturating oxygen levels. Doctors are very concerned about this. She was given some morphine to settle her and stabilise her heart rate and saturation levels, which it did. In addition to that initial dose during the night, Abby is also now on a continuous IV infusion of morphine. We will be speaking with the consultant this morning about her situation and prognosis.

No real change as yet

2007-03-06T15:53:00.000Z

Monday showed no discernible difference in Abby's condition despite the steroids she's been given, although doctors don't necessarily expect to see results just yet. Matt had another long chat with one of the consultants who said it could take three to four days before any improvement from the steroids is seen - if it works at all. Likewise, Abby has been put onto another antibiotic to fight an additional chest infection and it will be a similar timescale before it's known whether this bug has been cleared. We're really looking at the end of the week before doctors will be able to make a reasonable assessment as to whether the steroids and antibiotics have done their job.

Matt was also able to talk through some questions and issues with the consultant about what options might be available after that time, and what protocols would lead doctors to conclude that little more could be done for Abby.

Abigail enjoyed a lot of visits yesterday and was very settled indeed in the evening, with a steady heart rate and saturation at almost 100% - almost as if to prove (like we need telling) that she is still fighting.

Overnight yesterday into this morning, nurses reported that Abigail had suffered several episodes of a very low heart rate and desaturation. This was a concern to doctors because they had no immediate explanation as to why she might do that. Abby also had quite a lot of diarrhoea overnight too, despite the fact that she has been off her normal milk feeds for two days and is just on maintenance IV fluids.

Today, Abby's wonderful nurses gave her a bed-bath with strawberry scented creams and lotions and also another hairwash to bring out her amazing curls. It was also Matt's turn for a long cuddle in the comfy chair with Abby today, and this required two nurses and a military-style logistical operation to disconnect and reconnect the many lines, wires and tubes into Abigail. But it's been really good for both of us to be able to do that.

Overall, we continue to wait for the steroids and antibiotics to do their work and then see where we are by the weekend, but we are both increasingly pessimistic about Abby's chances of surviving this ordeal. We have been able to talk quite a bit to various people about choices we may have to make, how Abby will feel, and even life afterwards should she die, so we are certainly doing all we can to prepare ourselves for that scenario. In particular, we have sought advice about how to help Rebekah and Joshua through all this.

There is still some hope, of course. But it's now decreasing with each passing day.

Quick morning update

2007-03-05T08:29:00.000Z

So far, after Abby's loading dose of steroids last night, there seems to be very little difference in Abigail's breathing. She is still working hard with no discernible change as yet.

Options now limited

2007-03-04T21:20:00.000Z

So after a slightly brighter outlook yesterday (Saturday) with the news that the latest chest x-ray was clearing and that the pneumo-thorax had dissipated, we were disappointed to learn that Abigail didn't have a great night into Sunday morning. She was unsettled, didn't sleep much and had another tachycardic (high heart rate) episode. Doctors feel that this may simply be a kind of panic attack over the low pressures on the ventilator; that she is 'fighting' it too much. Doctors felt it necessary to administer a dose of Lorazepam to calm Abby down. Unfortunately this is also a respiratory repressant so Abby's low ventilator pressures went right back up to 16. She was also running occasional temperatures and dropping her oxygen sats overnight, so all in all, we were down this morning and felt that things had taken yet another step back.

No chest x-ray was taken today (Sunday) as doctors decided that any improvement in her lung function would be minimal and that there was no evidence of another pneumo-thorax. Doctors are very keen indeed to extubate Abigail to avoid another crippling infection taking hold. Infections are almost guaranteed on ventilation because of its invasive nature, and the longer you are ventilated, the higher your risk of infection. This afternoon, in an effort to get a real sense of where Abby is on her lung capacity, doctors dramatically reduced her pressures from 16 to 10. This was the lowest she'd yet endured and is approaching the kind of levels required to extubate.

We noticed an almost instantaneous increase in the workload Abby was undertaking to breathe. She was labouring much more, but just about managing to keep her sats up. She lasted around two hours at that level before doctors took a blood sample to measure her blood gases. The results showed that whilst Abby's ability to expel carbon dioxide was actually pretty good, she was simply not getting enough oxygen into her blood. This gave a very clear benchmark for the consultant to say that Abigail was just not ready to be extubated any time soon. Doctors increased her pressures once again to 14 and Abby seemed more settled.

This evening, shortly before Matt came home for the evening, one of the doctors sat us both down to explain the options for giving Abigail some steroid drugs. Steroids can really assist in clearing the lungs of mucus and inflammation in cases of very severe lung damage. Children who are given steroids can often be extubated successfully very quickly afterwards - it provides that last bit of help needed to make the lungs work to their maximum capacity despite their damage. The doctor explained that the medical team felt Abigail had now reached a plateau of reliance on the ventilator where she is not able to cope with the lower pressure required for extubation, and doesn't look likely to be able to soon.

A difficult decision arises because it is perfectly possible for us to leave her for another week and hope that she can be slowly weaned down to the appropriate levels, but this runs a huge risk of infection which may well overwhelm her. Or she simply may not ever be able to cope with lower levels, in which case we are effectively waiting for the next big bug to strike and making Abby work extremely hard in the meantime.

Alternatively doctors could administer steroids and hope that the drugs offer that last bit of help in reducing the inflammation in her lungs and weaning her off the ventilator. But there is always a downside to any treatment. With steroids it's that the drugs dramatically reduce the immune system's effectiveness. This means that whilst the drugs may well help with her lung function, Abigail will almost certainly be even more susceptible to another infection. The dilemma is that steroids now provide one of her last chances at survival and if we deprive Abby of that chance, there's every risk that she would be overcome by an infection anyway if we leave her ventilated for much longer.

After a lot of clarifying questions, we both felt that we wanted to continue our policy of giving Abigail the best possible chance at every opportunity, and so we've decided to start steroid treatment. In fact, Abby has already received her first loading dose this evening. Doctors will administer the drug over 24 hours and they expect to see an improvement (if it works at all) by the end of that 24 hours. An improvement would manifest itself as Abby being able to cope with lower pressures.

If the steroid treatment doesn't work, we've almost run out of options and it would simply be a case of leaving her on the ventilator to see if she could be weaned off in time. We wanted to take a positive step to help Abigail and so we've made that decision. Even if it results in no better lung function and another infection does strike, we hope that we'll feel we did the right thing for Abby at the time. We also feel that there needs to be a resolution to this illness soon - one way or another - for Abby's sake as much as anything.

And still she fights. We've been told this so many times over the last two weeks, but this time it couldn't be more stark: the next 24 hours are critical.

Deterioration, then a slight improvement

2007-03-03T17:46:00.000Z

Many thanks to Dad and Kerry for helping update the blog yesterday whilst we were both up at the hospital. We were very keen that people who are kind enough to keep up to date with how Abby is doing were informed of developments yesterday. It was certainly a very difficult day indeed after the apparent improvements midweek.

We both noticed on Thursday that Abby seemed to be working a bit harder on her breathing and she just looked distressed and not right. She often became difficult to saturate, too. That evening, as Dad has recounted, she had a difficult 'episode' lasting about 90 minutes where her heart rate was around 200, her respiration was 75 and her sats were low at about 80. She was clearly in distress, gasping for air and doctors were baffled as to the cause. There was obviously a major problem and over the course of Thursday evening, the joy of Abby's apparent improvements on Tuesday and Wednesday disappeared. She now appeared to be in a critical condition again. Doctors administered a sedative drug to help calm Abby down and she had a reasonably settled night.

As has been written, an x-ray on Friday morning revealed a pneumo-thorax in her right lung, which is one or more pockets of air in that have escaped into the chest cavity because the lung is breaking down and partially collapsed. This can become very dangerous if enlarged and can sometimes incur an emergency chest drain. This was clearly the reason for Abigail's 'episode' the previous night. Doctors opted not to do anything straight away as it can occasionally dissipate of its own accord. Abby's ventilator settings were increased again, she was offered more oxygen and she was put back onto a steady respiration rate on the machine.

Friends and family visited again on Friday afternoon, including Rebekah and Joshua, who we pulled out of school early in order to come and see Abby in preparation for the worst happening. After the news midweek that Abby was making improvements, once more we had to tell our children that Abby was very poorly indeed and that she may die. Becky and Josh were again very upset but they have both been amazingly brave and resilient these last two weeks.

It also transpired that on top of the pneumo-thorax, Abby appeared to have another infection somewhere as she was often spiking a temperature and had regular diarrhoea. When speaking with the consultant on Friday he said he was "very worried" because the situation and chest infection could quickly overwhelm Abigail. He explained that although Abby did indeed make clinical improvements on Tuesday and Wednesday, these were limited to her immediate signs: heart rate, saturation, blood pressure and respiration. She also seemed a lot better in herself because she had come off morphine and was much more awake and alert. Although this was all true, the fact was that during that time, there was actually no improvement in her chest infection at all. We did know this, but were hoping that the x-rays would mirror her bedside improvements later on. It wasn't that we were misinformed, but merely that her clinical improvements never were followed by progress in her lungs. There was also concern from the doctors that many of the major antibiotics had already been used and that a new virulent infection could prove very difficult to stop.

We went to bed last night fully expecting Abigail to die overnight.

This morning (Saturday), we woke up surprised that we hadn't been called up to PICU in the night. Abby had not had a great night, with little sleep and more temperatures and tachycardic episodes. Abby was relatively stable but still breathing fast and working hard for her air. Another x-ray was taken this morning and we awaited the ward round for the latest on Abigail's condition. During the morning we had the opportunity to hold Abby for the first time in ten days, and we both felt that medical staff were preparing us for the worst.

So we were shocked and surprised when we had a long chat to the consultant to hear that some small but significant progress had been made overnight. The pneumo-thorax had indeed dissipated on its own and was no longer an issue. But most importantly of all, for the first time since her admission, there was real evidence of some progress on her lung damage. Her left lung was visibly clearer on the x-ray and the right one was now free of the pneumo-thorax. Abby's consultant said he was "much happier today than yesterday" and said that if the same amount of progress could be achieved by tomorrow morning, then that would be a clear indication of momentum in the right direction. He said it was a definite turning point but was only a start. He also mentioned that the additional infection Abby is harbouring did not show up on blood cultures, which meant that Abby was fighting it off with her own defences.

It's been a real rollercoaster of a week, but the bottom line is that there has been some real improvement in the last 24 hours of so. But the consultant said that this really needs to be built upon quickly. Abby's lungs need to heal very rapidly and she needs to be weaned down on her ventilator pressures quickly if she is to be extubated. The longer Abby stays on a ventilator, not only will it be harder to wean her off it, but much more importantly there will be a much greater risk of further infection. They are almost impossible to avoid with an invasive life-support procedure. The consultant said that if we can get two or three clear days with no more infection and Abby can tolerate getting her ventilator pressures right down, then she will stand a very much greater chance of recovery without the ventilator.

It seems ironic that the thing that exposes the greatest risk to her life in the short term is the very thing that's keeping her alive! If she can tolerate a rapid weaning process, it's possible doctors may try to extubate her on Monday. If Abby remains dependent on the ventilator at her current levels for another week or so, then that would probably indicate that recovery is unlikely.

So after such a low yesterday, today seems brighter once again, if only a little bit. Abby will have to work hard over the next 48 hours if she's to come off life-support. It could be uncomfortable for her. And whilst it's possible that she could might tolerate a reduction in pressure, be extubated on Monday and make very rapid progress from there, it's also just as possible that she may be extubated on Monday, not cope without it and require re-intubation. But doctors won't know until they try. Things really are still very finely balanced, but we're hoping that the genuinely positive progression on her lung disease gathers momentum tomorrow.

More than anything, we'd both like a resolution to this awful time soon. A long protracted recovery is OK, as long as there are clear indications of that direction. What we don't want is another few days (or week) of stability but no progression or regression. Abby doesn't deserve either of those scenarios. We'll see what tomorrow brings.

Auntie Kerry writes...

2007-03-02T21:59:00.000Z

Hi, Auntie Kerry here, Matt's sister. I am also just back from the hospital. Thankfully Abby was pretty settled while we were with her and it was good to spend some time with her.

I just wanted to reiterate the thanks that Matt, Nix, Dad and Mum have expressed. During an incredibly difficult and turbulent couple of weeks the prayers, words of encouragement and practical support has been, literally, a God send.

What an incredibly brave, courageous and beautiful little girl. We love you heaps Abby.

Auntie Kerry and Uncle Chris xxx

This week is not over yet

2007-03-02T21:21:00.000Z

Hi. Matt's dad, Nigel, here - writing this update on their behalf.

Matt and Nix are still at the hospital with Abby, which is where they have both been since yesterday (Thursday) evening. After the encouraging signs of improvement up to yesterday, Matt phoned last evening to tell Nix of his worries over the worsening signs of a further setback. Nix left home as soon as possible to be with Matt, and Abby, at the hospital.

Our updates during the rest of last evening and this morning were taken from text messages Matt sent us. These are as follows;

Yesterday evening 8:28 PM: "Doctors baffled by Abby's panicky breathing and very high heart rate this evening. Slightly better now but (this is because) she has been sedated. This week is not over yet."

Yesterday evening 10:09 PM: "Abby (is now) more settled (but) only because of sedation. Just not sure why she is panicking and working so hard."

This morning 8:38 AM: "Abby had OK night but ventilation increased after worrying panicky episode of high heart rate and respiration last night. She is working hard for air. Doctors (are) baffled."

This morning 11:25 AM: "Abby not good. X-rays show bad damage to her lungs and pneumo-thorax (air outside but surrounding the lungs which makes breathing more difficult) which may require an emergency drain to be inserted. The prognosis is not good."

Soon after this last message Matt phoned to ask us (Ronnie, my wife, aka Nana) and I to collect Rebekah and Joshua out of school early and take them up to the hospital to see Abby again. They, and we, were able to spend some time with her before we brought them home again.

The situation remains very serious. The consultants have told Matt and Nix that they have not yet run out of options, but the number of remaining options is getting very small. She is back on the ventilator with the machine in control, whereas just before yesterday Abby was initiating breaths and the machine was helping her. It is strongly desirable that a patient should be off a ventilator by the sixth day - this is Abby's tenth day. When her ventilator line is temporarily disconnected to suction clear her airways it is taking her much longer today to recover her oxygen blood saturation levels.

Abby may also have another infection, but it will take 48 hours to culture it and see what exactly it may be. However, Abby has already received doses of the three strongest antibiotics available (the big guns) so if the infection proves to be resistant to these, the options again are limited. A further X-ray planned for this evening will show whether the pneumo-thorax and emphysema are progressing or stable.

Your continued love, support, encouragement and prayers are so valuable to us all. Thank you, because this week is not yet over.

Ventilator pressures reduced

2007-03-01T09:48:00.000Z

Abigail has been settled overnight and nurses have weaned down her ventilator pressures even more. Abby was admitted to the Evelina on Wednesday of last week on a pressure of 20, which is about as high as her lungs could take. This week she has been down to 18 then 16 and yesterday she was at 14. Overnight, medical staff have reduced her ventilator pressure to 11 and a range of 8-10 is required for extubation. Abby's oxygen requirement is up slightly but that is the trade-off for reducing her pressures sightly. Better to get her extubated and off the ventilator but requiring oxygen for a few days than to delay any longer. There are rumours that consultants may try and extubate Abby today, but we'll have to see how she fairs.

Abby improving

2007-02-28T19:04:00.000Z

From the merest glimmers that Abigail may have been making some small steps of progress on Monday, Tuesday turned out to be a day that gave us a bit more confidence in those hopes. Abby was off sedatives and down to just three antibiotics, although she is being given occasional doses of a drug that will help wean her off morphine, which of course is a very strong opiate-based drug. A new IV line was inserted yesterday but unfortunately that 'tissued' later the same day, so yet another new line had to be put in last evening. Abby now looks like a pin cushion with all the bruises and attempts at IV access all over her body. Doctors were cautiously hopeful that Abby may have begun to turn the corner a little bit yesterday, and it was also the first day since the trauma of last Wednesday that we both felt perhaps Abby might just pull through this.

Today there hasn't been a chest x-ray so far, but Abigail's immediate bedside clinical evidence is good. Nurses are slowly weaning Abby down on her ventilator pressures and her oxygen percentage is at the lowest it's been since she was admitted to our local hospital last Monday. She suffered from a bout of diarrhoea yesterday and although doctors think this is simply an upset stomach due to the strong antibiotics she's on, they have stopped one and changed another to leave her on just two now.

Abby continues to be on the drug used to minimise her withdrawal from morphine, but since Abigail was only on it for a week there shouldn't be any issues there. Abby's chicken pox lesions are also beginning to clear at last. The physios have been with her quite a bit in the last two days using quite vigourous techniques to clear much of the mucus from Abby's lungs, and they've been quite successful too. Abby is awake quite a lot now and seems quite comfortable despite still being ventilated. Nurses have put her on a comfy air mattress to ease any pressure sores and she's even won a 'Bravery Certificate' from the PICU play co-ordinator!

We had a chat with the consultant today during her ward round and she confirmed that Abigail really had made quite quick progress in the last two days. She said Abby appeared to be coping with the reduction in pressures and oxygen on the ventilator, and that if she continues at this pace there might be an opportunity to extubate Abby from the ventilator by Friday. When asked to describe Abby's status now, the consultant said she was "definitely out of very serious danger now". Obviously we need to be somewhat cautious since she is still ill enough to be on PICU and is still being ventilated, so another infection is not beyond the bounds of possibility. But Abby has certainly fought and made good steps towards recovery in these last two days. The consultant also said it was unlikely Abby would suffer any permanent lung damage from this episode, but that it was possible she'd require oxygen for a while to get her lungs back into shape.

We remain cautious for the time being and there is a way to go yet, but it does seem that Abigail's sheer determination to fight has persevered once again. She is simply amazing, and we know she's astonished a few doctors and nurses in the last week. She has has amazed us too, even though we know that she's always been a fighter.

We feel a little bit as though we cried wolf over how sick Abby has been and how close to dying she came. But we didn't. She really was very gravely ill indeed and came as close to death as it's possible to be on several occasions in the last seven days. We just hope and pray that the progress she's made over the last 48 hours will continue to full recovery and that she'll soon be able to join us back at home where she belongs.

Quick morning update

2007-02-27T09:44:00.000Z

Abby had a very settled night in hospital and seems as contented as possible this morning given the circumstances. Her heart rate is a little low but no cause for concern and Nix says that she looks "lovely and sleepy".

Stable and more awake

2007-02-26T17:24:00.000Z

Abigail remained stable for most of Sunday and we had a busy day at Evelina with lots of visitors, including Becky and Josh who got to see their sister again for the first time since the trauma of last Wednesday. Joshua, in particular, has been deeply affected by what's happened, but he's asking lots of questions so that's good. Abby even started to wake up quite a bit in the afternoon and opened her eyes several times as doctors weaned her off her sedative drugs. She had a quiet and restful night on Sunday too.

Today (Monday) there has once again been mixed news. Blood tests in the last day or two have revealed there to be a secondary source of infection somewhere and doctors were pretty sure that the central femoral IV line into her groin was the culprit so this has been removed. Despite lines being essential for access with meds and fluids, they can start to be a source of infection after a few days. They also have a tendency to stop working after four or five days and both of Abby's other lines 'tissued' today so were removed. Another line into her chest was eventually put in after a lot of trouble, so the antibiotics can keep flowing in.

A chest drain used to remove fluid from the chest cavity which had 'leaked' out of her poorly lungs was also removed today after draining a lot of fluid. That should give more space inside for her lungs to expand.

The better news is that Abigail is now off all sedation (morphine) and very much more awake. Doctors are taking this steadily because they don't want Abby to panic and fight the ventilator, but she seems to be relatively happy and without pain. Although the pressures and oxygen levels on her ventilator are still quite high, Abby is now initiating all breathing on her own and at her own rate. The ventilator is simply helping her with each of those breaths when she takes it. This is certainly a small step forwards.

Abigail is also off all saline drips and is being fed her normal daily milk feed, albeit slowly over 20 hours. She has also had two other drugs stopped: one used to thin her blood (because of a fear of a leg clot) and another to help her heart. She's only receiving three very strong antibiotics for her chest via IV. These are all tiny steps forward but the magnitude and severity of her chest infection cannot be underestimated.

We had a good chat to one of the consultants today and we tried to nail a few issues down. The recent concerns over her deteriorating kidney function seem to have been reversed with the help of drugs. The consultant said this could easily turn for the worse again, but for the moment her kidneys were improving and the assessment was that they had simply taken a "big hit" with the infection. Should they get worse again, though, that would prove very bad news indeed, indicating that the kidneys were indeed shutting down.

Today's chest x-ray showed that the infection is no better than the last few days. When we asked whether (given its severity) doctors would have expected her infection to have improved by now, they said no. But the key now is for her immediate clinical signs improve as the infection begins to clear. The consultant said there would be problems if Abby was not significantly better and preferably off the ventilator by the weekend. If Abby is still being ventilated to the current high level at the weekend it will be because a) Abby proves difficult or impossible to wean from the ventilator, or b) because the chest infection simply hasn't cleared at all. If this happens, Abby is likely to succumb to the next infection to bombard her fragile immune system.

In terms of her immediate prognosis, we asked whether Abby could be described as "critical". The consultant said no, because critical means that the patient could die at any moment. She said that whilst things could still go downhill very quickly for Abby, she was not in any immediate danger right now and was pretty stable. The consultant added that the medical team had expected Abby might die on Thursday soon after she was admitted because of the severity of her infection, but that she'd done very well to pull through that time.

And that is really our constant benchmark: if Abby continues to fight - which she clearly is at the moment - then we and the superb medical team will continue to offer her the very best opportunity to recover.

Sunday: Abigail still stable

2007-02-25T09:59:00.000Z

Abby remained stable and had a comfortable night Friday into Saturday and we slept well at the hospital. Yesterday (Saturday) proved a bit of a mixed bag.

First of all, the PICU unit had a difficult day with emergency admissions and very sadly at least one child who lost their own fight. With it being the weekend with lots of families and visitors around, there was an uneasy atmosphere in the hospital and a very difficult mix of troubled, grieving and 'just visiting' people in the family room.

Abigail continued to be stable throughout the day, although she did seem to have a little bit of trouble maintaining her oxygen saturation and needed to be 'bagged' manually every now and again to return her sats up to something approaching 100%. It is interesting how doctors no longer choose to deeply sedate patients who are being ventilated any more. This is because it can then prove very difficult to wean them off again later if their natural reflex to breathe has been eliminated for so long. Nurses are constantly monitoring and adjusting Abby's medication to reduce her dependency on the ventilator (if she's ready) and to maintain her sedation at an optimum level. Too much sedation and she'll be difficult to wean off, too little and she'll wake up, panic and fight the ventilator.

At one point when Abby's nurse had taken her off the automatic ventilator and was 'bagging' her manually, she tried just stopping for a few seconds. Abby responded by breathing on her own for a minute or so. Her respiration was rapid and she couldn't really maintain her O2 sats, but it proved that her reflex was still there. It must be stressed that this isn't really progress in any way, more an indication of the level at which they're keeping Abby asleep.

Indeed, the ventilator being used for Abigail is clever enough to offer a pre-programmed set of breaths per minute, but to allow Abby to take more on her own if she wants. When Abby takes a breath of her own the machine will recognise that and help her, rather that continuing with it's rigid preset pattern. For most of yesterday, the ventilator was set at 20 breaths per minute, but Abby was actually breathing 40-45.

Abby also woke up a little bit at one point which required a slight increase in sedation, but it was good to see her moving about a little. Doctors are finding that Abby's respiration is performing better in a 'prone' position, lying on her tummy. Unfortunately she can't stay in this position all the time and must be turned occasionally. It was just bad luck that not long after we'd helped nurses move Abby onto her tummy and got her settled and free of tube and wire tangles, the radiologist turned up to take her daily x-ray and we had to move her back onto her back.

Yesterday's x-ray remained essentially the same in terms of the infection and damage to Abby's lungs. The consultant said she was tempted to say that it was a little bit better, but that was probably just her wanting it to be better! In truth, it was the same but no worse.

The only slight worry yesterday was that the consultant said the performance of Abigail's kidneys had deteriorated quite a bit overnight. Abby's urine output was low too. It was explained that some drugs would be given to rectify this and kick-start the kidneys into full working order again, but that if this didn't work, it could be an indication that her kidneys were beginning to shut down. That still isn't confirmed yet but is a concern. The consultant said that if she had to make a choice either way, she'd say that Abigail had taken a tiny turn in the "wrong direction" yesterday. Abby remains very ill indeed. This morning (Sunday) Abby is pretty much the same: she had a comfortable night and we await today's chest x-ray and any indications on the kidney concern.

Abby at Evelina

2007-02-23T17:29:00.000Z

After our last update at 7.30pm on Wednesday, I went back to the hospital in preparation for Abby's expected retrieval to Evelina in London. But her condition had worsened significantly and she was deteriorating fast. She was fitting quite badly because she was so uncomfortable and also with the trauma of her infection. But hefty doses of anti-convulsant drugs couldn't be administered because these would have suppressed her already fragile respiratory system. The original plan was to wait until the retrieval team were on their way before intubating Abby and 'bagging' her breathing manually. But her deterioration was such that doctors decided to intubate there and then anyway as we were losing Abigail rapidly.

Once this had been done and more effective and stronger drugs for her epilepsy and infection were given, she stabilised somewhat. The team arrived from London at around 9.30pm on Wednesday and spent some time transferring her to a portable ventilator and making sure she was as stable as possible. Matt went up to London in a car and Nix travelled with Abby and the retrieval team in the ambulance which was blue-lighted up to the Evelina Children's Hospital. Once there she was transferred into the Paediatric Intensive Care Unit. We stayed with Abby for some time that evening whilst the medical staff tried to stabilise Abby and make her comfortable. We were offered a room to stay at the hospital and went to bed at about 2am.

Yesterday morning (Thursday) we were told that Abigail had finally stabilised well at about 4am on a special kind of oscillating ventilator that pumps air in and out of her lungs very quickly. Her blood gas (O2 and CO2) readings were OK meaning that she was getting enough oxygen into her infected lungs and managing to expel toxic CO2 as well.

During the day yesterday many minor adjustments were made to Abby's treatment: adjusting her O2 levels, attempting to reduce the pressure of her ventilator, all with the aim of using the ventilator to help Abby only just as much as was needed, but not to do all the work for her. This is because it can be notoriously difficult to wean people off ventilators if they have relied on them for too long. To this end, Abby is not very deeply sedated but something more akin to 'asleep'. She moves slightly from time to time (she flinched when Nix cleaned her mouth with a sponge) and attempts to take breaths of her own sometimes.

In the evening we had a long chat with her consultant, a thoroughly lovely and brilliant man who clearly wanted exactly what we want for Abigail, namely the best chance for her to fight the infection, but a desire not to do anything futile for her should she deteriorate. It was made clear to us that although she has stabilised, Abby is still very gravely ill and that she may yet die. X-rays continued to show no improvement to her lungs and the infection was described as "very severe indeed".

The care and expertise we Abby is receiving at Evelina is nothing short of first class. The new hospital is amazing and the specialist nurses and doctors are utterly brilliant. We have no doubt that Abigail could not be in a better place for a chance of recovery, certainly in London and probably in the whole of the UK. Overnight last night, her two nurses carefully washed and brushed Abby's beautiful hair, so that some of her trademark curls are back!

So after the adrenaline and pace of Wednesday (a truly awful day), yesterday was a lot calmer and stable. We both slept well last night for the first time in a few days. Becky and Josh are being looked after by Matt's parents, who are doing a sterling job at keeping life for them as 'normal' as possible given the circumstances.

Today (Friday), Abby is much the same. She's responding well to being put onto a more conventional ventilator and has maintained her O2 saturation and blood gas readings. She remains in a very critical condition indeed: it's easy to think that after coming so very close to losing her on Wednesday evening, the fact that another two days have passed with stability means that she's improving, but this really isn't the case yet. She is simply stable and the infection has got no better. We're under no misapprehensions about what could yet happen or what very difficult decisions that we may yet have to face. But this morning, her nurse said that she thought Abigail had "astonished a few people overnight" last night. We took that to mean that her condition was expected to worsen but she continues to be an amazing fighter and she remains stable.

We have agreed with her consultant that whilst Abby is fighting, we (and they) will work to give her every opportunity to fight. We hope to speak to the consultant again this evening and we await the results of today's chest x-ray. We'll update again when there is news and we're able to.

Transfer to intensive care in London

2007-02-21T19:29:00.000Z

I only have time for a short update tonight, but we know that many have been following developments over the last day or two. I'm afraid the news about Abby is not good.

She was no better in hospital this morning and actually a bit worse. New x-rays were taken of her infected lungs which showed virtually no discernible part of either lung has capacity. Her respiration has been extremely high and she has struggled increasingly to maintain the oxygen saturation in her blood. Her heart rate is also racing. This evening she has begun to fit as a result of being uncomfortable and feverish.

Doctors had expected there to be some stability but her deterioration was clear. This afternoon we were asked to what extent we wished to "carry on". After consultation with doctors and discussing the implications of both options, we decided to have Abigail ventilated and moved to ICU at Evelina Children's Hospital at St Thomas' in London. There she will get one-to-one nursing and doctors will be able to offer whole further range of infection-stopping and epilepsy-stopping drugs that are not an option right now because they would compromise her breathing. If she is ventilated then this is no longer a concern.

Obviously ventilation carries many risks of its own and an even harder decision will have to be made should treatment once on a ventilator not progress. We decided that Abby should have this chance to fight. Doctors have been surprised at how much of a fighter she is and are happy that we try this plan.

In truth, it's her only chance. Abby is fading otherwise. Doctors think that if Abigail is to respond, she will begin to do so within 24-48 hours. We have had to tell Rebekah and Joshua that there is a possibility that Abigail may die. They are coping OK but are very upset. We hope that Abby will be transferred around 9.30pm tonight. It's likely that both Nix and I will stay up in London with her. I will update with more as soon as I can.

Latest on Abigail

2007-02-21T09:18:00.000Z

Abby did not have a very good night and is now on oxygen. She also had another chest x-ray, the results of which are not yet known. We will post a fuller report around lunchtime today after we have spoken with doctors on the morning ward round.

Abby in hospital

2007-02-20T12:40:00.000Z

We realise we yet again have failed to update this site regularly with news of Abby, so it's disappointing to have to post now with news that isn't great.

Abby has had chicken pox since the middle of last week, which is obviously uncomfortable but no real drama in itself. Over the weekend though, things seemed to get worse and Nix took her to the doctor's on Monday morning and she was confirmed as having a chest infection. Last night we felt that Abigail should be taken to A&E because her respiration had become laboured. Several hours after being triaged, Abby was finally admitted at about midnight. Initial concerns were for the laboured breathing and a slight suspicion over possible encephalitis because Abigail was very sleepy and couldn't be roused. This is a known risk associated with chicken pox complications.

The chicken pox itself is getting worse and is covering much of her face, ears and mouth. The encephalitis concern has gone away because Abby is now quite restless (even when asleep) and is clearly uncomfortable. An x-ray last night showed several shadow areas on her chest which were described as "mucky". She clearly has a pneumonia-type chest infection and it's likely that this was caused as a complication of the chicken pox.

Abby has had a line put in (quite difficult as her veins are completely shot from previous attempts!) and is on IV anti-virals and antibiotics. The hope is that this should help clear the chest infection and pull the chicken pox up short to clear soon. Once that is done she can come home to recuperate. The consultants have said to allow at least 48 hours for this.

Abby is very restless when awake and asleep but seems as comfortable as possible. The nurses have also given Paracetamol and Piriton for the chicken pox spots and discomfort. We have lost count of the number of different drugs she's on! All in all, Abby is OK but just needs these meds to really kick in today.

More updates here soon - we promise!

Abigail is three years old!

2006-09-18T14:43:00.000Z

This week marked another remarkable milestone in Abby's life - she was three years old on Saturday. We celebrated the day with presents, cards, balloons and a family meal in the evening.

Abigail really has come such a long way since those very dark days in September 2003. Lately, she's been putting on weight again since moving to a new feed and we think her second front tooth has cut in the last few days. She's definitely getting bigger and heavier too, although there has been a minor downside just this week - she seems to have started suffering from nosebleeds for some inexplicable reason. We think it may be that Abigail has turned her head whilst in bed and momentarily buried her nose into the pillow, causing some sort of rupture. On the other hand it may be that she just suffers the occasional nosebleed like many other people! Aside from that and an annoying (for her and us) increase in secretions requiring suction, Abby is very well indeed.

And what's more, she's three years old!

Lovely standing photos

2006-08-22T23:28:00.000Z

We thought we'd post these lovely pictures of Abigail in her standing frame this morning. Not only does she really seem to enjoy the different perspective of being upright, but it's very good for her overall posture and muscle condition. Today, her head and neck control seemed to be particularly good: Abby held her head up for a really long period and was listening to what was going on around her. Shortly after these photos were taken she began to get tired and gently rested her head down on the tray in front of her!

The four rascals

2006-08-19T11:46:00.000Z

Here's the latest picture of all four rascals together: Rebekah (7), Joshua (5), Abigail (nearly 3) and not forgetting Cubbs the teddy bear (age unknown). Abby continues to do well through the summer. We had to work hard to maintain a cool temperature for her during the recent hot spell, but she is growing and getting heavier all the time! We're currently considering how best to cater for Abby vehicle-wise. From her third birthday in September, we'll be eligible for an extra payment that goes towards mobility. We want to sell our existing car before it loses too much money on depreciation, but the question is whether to buy a Motability car now with the possibility of having to make disability adaptations soon, or buy another car now and wait a while before buying through the Motability scheme. It's a confusing jungle of opinion and information!

A front tooth is through

2006-07-18T17:14:00.000Z

Although Abby's teeth have been coming through for some time now, her top front two have been trying to push through her gums for a long time. All her teeth have taken longer than they should to appear because Abby is obviously not chewing and biting everything in sight like most babies and toddlers. Sadly, we're not expecting her teeth to be the most pristine set of gnashers in the world - a combination of the medication she's on and an incorrectly set palate means that she will develop discoloured and slightly crooked teeth. But her top front teeth will change her appearance somewhat so here's a close-up of the new tooth poking through. And just as Abigail has got a prominent new tooth, Rebekah (7) has just got her first wobbly one!

A short holiday at Demelza

2006-07-03T16:49:00.000Z

Abigail has just got back from a lovely unexpected four day holiday at Demelza House Children's Hospice in Kent. As well as our usual allotted number of days she can stay for respite care, we are also on a 'last-minute' list of families that can fill vacant slots at Demelza should one become available at short notice. So we got a call from them on Tuesday asking if Abby would like to come and stay for the weekend, which she did. As we said to the lovely team down there when we dropped Abigail off, we don't look at her staying there as respite for us, as much as respite for her! She gets to be in a different and very stimulating environment where she can get up to all sorts of messy and tactile fun, whilst we are able to do something with Rebekah and Joshua for the weekend. We're still not sure if Abby watched the disappointment of the England/Portugal match, but we do know she had a wonderful time there!

Much better now

2006-06-07T16:08:00.000Z

After a week of her favourite antibiotics, Abby is much better although the last remnants of her cough and raspy throat still seem to be lingering. Curiously, we've really noticed how the bug has taken it out of Abigail. Since she's been better, her head control is definitely not what it was a week or two back. We think she'll improve again as she builds up her muscles in her chair and standing frame. Here's a recent picture of Abby sticking stickers onto the frame of a picture drawn by Josh for Nana's birthday!

Abigail under the weather

2006-05-30T09:55:00.000Z

Abigail has been a bit unwell over the bank holiday weekend. She started with a croupy cough at the end of last week which has now progressed to a full cold and really tickly cough which makes it difficult for her to catch her breath. We are well aware of the indicators for progression to a chest infection (which can be dangerous for Abby) but thankfully this virus doesn't seem to have gone to her chest. Yesterday, Nix took Abby to the local hospital to have her checked over and to try and get her on a course of antibiotics to clear the virus, and it was confirmed that her chest is indeed clear. She should be over this in a few days, but we were remarking that there really is a difference in her when she's under the weather - you can tell she's unwell from her demeanor. She doesn't 'smile', doesn't respond to us as much and generally seems quite cheesed off!

Standing up!

2006-05-16T09:33:00.000Z

We've recently taken delivery of a toy for Abigail that gives her a whole new perspective on the world. It's a standing frame and she already uses one at nursery, but now we have one at home too. It's an unwieldy looking contraption, but essentially Abby is strapped in to a tight fitting harness that allows her to stand upright. She is supported around her hips and back, but in such a way that her legs and feet are bearing her full weight. As well as offering her an upright view of things, it's really good for her legs and back muscles to be stretched and used to bear her weight and helps prevent curvature of the spine. Amazingly, Abby's head control is superb when she's standing and she can lift her head up for long periods. In front of her is a table that she can put her hands on or feel various objects that we place in front of her. The table top also makes way for a bowl underneath, and at nursery her helpers put dry pasta and rice into the bowl for her to feel.

All in all, it's really lovely to have Abby upright and looking around so much and we've also begun to realise just how big and tall she's getting. Plus we think that this is the best picture so far of Joshua, Abigail and Rebekah together!

Abby goes swimming!

2006-02-27T12:19:00.000Z

We're really pleased that Abby now has a hydrotherapy session once a week in addition to her two days at the Phoenix Centre nursery. Here are some photos from her session this morning. Abby really seems to enjoy and relax in the pool and there are clearly many benefits for her. She gets a 'full-body' workout that can stretch all her muscles in a near zero gravity environment. The warm water helps to relax her body and helps to ease stiffened joints and limbs and there is obviously a sensory benefit for Abby - she just loves being in the water!

It's amazing to see her visibly relax as she lies on her back in the pool. Here you can see her helper supporting Abby with just two fingers behind the neck as Abby lies almost completely flat in the water. We've also shot a small amount of video of Abby's hydro sessions and hope to upload that here soon.

Abigail phones a friend

2006-02-09T20:38:00.000Z

Chris Tarrant, ex-Capital Radio breakfast DJ and now presenter of Who Wants To Be A Millionaire? is a patron of the Phoenix Centre special needs nursery where Abby attends twice a week. He regularly visits the centre and spends considerable time with the staff and children. It was kept a secret exactly when he'd be visiting (presumably to avoid hordes of parents asking him if they can "ask the audience") and so we weren't there to see him, but he did visit on one of Abigail's days there. She missed out on a snap of her with the great man in the local paper, but all of the children were photographed with Chris, so here's our grainy copy of Abby plus game-show host.

Doesn't look too star-struck, does she?

The kids together on Josh's first day

2006-01-10T10:50:00.000Z

Here are Rebekah, Joshua and Abigail together as they set off on Josh's first day at primary school. With Becky and Josh now at the same school, it's just a five minute walk up the road to drop them off which has made an enormous difference to our school morning logistics! Both Rebekah and Joshua are getting on really well at school and seem to be happy and settled there. Meanwhile, Abby gets dropped of at the Phoenix Centre special needs nursery she attends after the other two have gone to school. She currently goes there two days a week and although she is the youngest and among the most profoundly disabled children there, she receives a great deal of educational input and therapy intervention. We're really pleased she's going there.

Abby unwell and sees consultant

2005-10-13T09:54:00.000Z

After a quick appointment with our GP on Monday, we felt that Abigail really didn't get any better over the next 24 hours or so. The last two years has broadened our paediatric medical knowledge immensely, and we knew that the dose of antibiotics she'd been put on was probably not nearly enough.

Yesterday morning we decided to call our community homecare nurse who decided to try and get Abby a last minute appointment with Dr Lord - Abigail's paediatric consultant - at her clinic that morning. This was arranged and Dr Lord immediately changed the antibiotics and increased the dose considerably. We've been told to beware of fevers and aspiration (where Abigail breathes in mucus causing an infection in the lungs) and to continue to use painkillers to ease the sore throat.

Abby still seems to be suffering with her sore throat, but we're pleased that she's on a more significant dose of an antibiotic we know works with her.

Next week we have a regular six-monthly appointment with Dr Hughes, Abby's paediatric neurological consultant.

A sore throat for Abby

2005-10-11T15:34:00.000Z

Abigail seems to have got some sort of throat infection in the last day or two. Nix has had quite severe tonsillitis over the last week, so we hope it doesn't turn out to be that bad for Abby. Yesterday morning Abigail actually cried quite a bit (very rare for her) because her throat was so sore. We managed to get a relatively quick appointment with a doctor and she's now on antibiotics which should see off any infection.

Other minor news is that Abby has had her wheelchair adjusted by her physio and the wheelchair service because she is growing so big! Also, Nix and Abby spent Sunday at Guy's hospital in London as they were invited to participate in a training day for new doctors. The fresh-faced recruits are introduced to a selection of interesting paediatric cases and asked to diagnose different elements of their conditions. Nix said it was an informative (if occasionally worrying!) insight into medical training and Abby got £55 for her time!

Abigail Updates online

2005-09-28T10:04:00.000Z

So many of you have been kind enough to keep up to date with our daughter Abigail and her progress over the last two years. We thought we'd try and keep up with the times and allow people to view her email updates in blog form on the internet! We'll be reproducing many of her previous updates here as an archive and also posting new and more regular details on Abby here in the future. There will also be photos and more frequent information on her medical condition and home life. Don't forget that you can also leave comments too - just click on Comments at the foot of each post. Thanks for looking!

New birthday toys

2005-09-17T16:41:00.000Z

Here are photos of Abigail playing with some of the new toys she got for her birthday. We decided to buy her some proper special-needs tactile toys and she seems to enjoy using them. The bells form an octave of notes which she can 'ring' by moving them with her hands and the other toy is a 'lollipop jungle'. This is placed in front of Abby and allows her various levels of touch sensation depending on what she reaches for. All these toys are designed to offer interaction on a tactile level as well as attempting to encourage a cause-and-effect response. It's great to hear Abby ringing her bells and we often find her asleep with her hands firmly clasped round the lollipops!

Abby is two today

2005-09-16T10:14:00.000Z

Another milestone reached – Abigail is two years old today! We had a great time away in France a few weeks back although Abby did develop a nasty cough in the last day or two. We took her to our GP as soon as we got back to the UK and she was referred immediately to hospital with a suspected chest infection. An x-ray revealed that her chest was actually clear and that she simply had a persistent viral infection in her throat. Thankfully, she didn’t have to stay in hospital that night and is still on antibiotics now, but doing OK.

The Freestones in France

2005-08-30T21:28:00.000Z

Here we all are visiting an imposing castle on our recent holiday in France. The weather was fantastic for the whole ten days and Abby stayed very well right up to the second to last day, when she developed a bad cough. We were also able to make full use of the very good disabled concessions and facilities at Disneyland Paris too. Abigail seemed to enjoy the gentler boat and train rides, whilst Becky and Josh (to our surprise) were eager to try out the faster roller-coaster rides. All in all, it was great to be away together as a family - we'd missed out on France last year as Abby's health was so unpredictable.

Fourteen months at home and almost two years old

2005-08-20T17:26:00.000Z

The last few months have been very hectic (and stressful!) preparing to move house. We had hoped to be moving this week but unfortunately the chain collapsed on the day of exchange two weeks ago. This has been extremely frustrating for us as Rebekah left her school at the end of the summer term and will start a new school in September close to where we’re hoping to move. We have sold our house again to a first time buyer and it looks like we’ve also managed to persuade the sellers of our new house to stick with us. It’s all a nightmare!

Abigail is mostly keeping well. She has had a couple of infections which have gone to her chest and required specific antibiotics but she’s managed to stay out of hospital. That’s fourteen months since Abby was last an in-patient! At the last hospital check-up, Dr Lord (Abigail’s paediatric consultant) said that Abby was the best she’d seen her. All of Abigail’s medications continue to keep her epilepsy and limb spasms to a very manageable level without overly affecting her alertness (such as it is) and sleep patterns.

Abby has been getting on well at her nursery. She’s been spending a lot of time in a standing frame and this seems to have really improved her head control, although she still has a very strong head turn to the left. It seems that in the stander she likes the freedom of nothing touching her head as she’s still quite sensitive about having the back of her head touched. She often has a bowl of dried lentils or pasta in front of her to feel and she seems to enjoy this sensation.

The visual impairment specialist has observed that Abigail sometimes appears to track fibre-optic lights at a distance of 10-15cm and that she is able to relocate a single light source if the light is turned off then on again. Vision is something which can be worked on until the age of six or seven so it is important that this sense is stimulated.

We’ve been very fortunate to have been offered a place for Abby at the Phoenix Centre in Bromley – once we are finally resident in the borough! This means that when we move she will continue to get the same type of input she gets now. In Greenwich the service is run by the health trust but in Bromley it is run by education. Abby will be the youngest child they have ever taken as children are usually at least two-and-a-half before they start there. But because Abby was receiving similar services in that format in Greenwich, Bromley have agreed to match it and she has jumped 22 places on the waiting list!

We received the wheelchair for Abby a couple of months ago and it has made an enormous difference to her posture. She looks much more comfortable and seems to use her hands more. This seat should suit her up to the age of six and we were very grateful to the charity who funded its £3500 cost!

We saw the dietician this week and Abby has been put on a diet! Unfortunately one of the drawbacks of her inactivity and the fact that she is tube fed is that she has piled on weight. She has chubby wrists that a six month old would be proud of! Hopefully we’ve caught the problem early so that she doesn’t become too big as this will obviously make lifting difficult and also won’t help her to fight any chest infections she may get in the winter.

Talking of getting bigger, it seems odd to think that Abigail will be two on September 16th. On the one hand the time has flown by, as it always does with children. On the other hand, those very dark days of scans, intensive care, continued hospitalization and not knowing whether Abby would live or die from day to day do seem like a very long time ago indeed. Much of that uncertainty remains and always will. But we are grateful that Abby has been home for so long now: that she really is one of the family and that we’ve had the privilege of nurturing and caring for her. Through the intense heartache of the last two years, Abigail Erin has brought us much joy and happiness.

Nine months at home and eighteen months old

2005-04-05T12:07:00.000Z

Just before Christmas we had an appointment with a paediatric neurosurgeon at Kings College Hospital to discuss our concerns about the shape of Abby’s head. When she was born we thought she had an unusual bump at the back of her head, but this wasn’t really picked up by medical staff until she was an in-patient in January when the bump had become much more pronounced. X-rays were taken at that time but no obvious cause was found. As she grew her head became more and more irregular in shape. The consultants at Guy’s wanted to do a 3D CT scan of her skull but this was overruled by the neuro radiologists who said that the brain damage was the reason and the bump was preferential brain growth. Whilst this was likely it didn’t explain why the bump was there at birth when the brain insult was believed to have happened just the day before she was born. Eventually Dr Hughes at Guy’s said that she could not convince the specialists there so “would take another route” and referred us to Kings.

In the meantime we had been reading on the internet about a condition called craniosynostosis. This is the premature fusion of the skull bones and pictures we saw looked just like Abby’s head. The neurosurgeon examined Abby and agreed that she did indeed have craniosynostosis and that every suture join in her head had fused incorrectly. Rather than this being preferential brain growth, however, he believed that it was actually the result of her brain shrinking after the damage. He also thought it highly likely that the back plates of her head had fused before birth. Surgery for this is not an option for Abby as although the condition can be corrected in a healthy child, it relies on the brain growing rapidly and this wouldn’t happen with Abby. When asked if this was a possible cause of the original brain damage he said that it was a “coincidental association but not directly causal”. Dr Hughes, who also attended the appointment, said it could have been a marker to some damage occurring earlier in the pregnancy and that whatever happened the day before birth was the catastrophe which caused her to stop moving in the womb.

So now we have a few more pieces of the jigsaw but have to accept that we’ll never know exactly what happened. This is very frustrating and makes it a bit more difficult to deal with.

On a more positive note, she started at an Early Intervention Centre at the beginning of February. This is a fantastic place for children with wide ranging special needs from mild to severe. There are a maximum of eight children there on any one day and they have either one-to-one or two-to-one care. Abby goes for two days from 10am till 3pm. At the centre she receives physio, speech and language therapy, music therapy, vision impairment therapy, hydrotherapy, sensory room input and postural management. Abigail was getting most of these services at home but now there is a much more cohesive approach. Some of the therapists are the same as she was having at home so there has been some continuity in her care. Nix thought she would have loads of free time once Abby started there but this isn’t really the case – the day just seems to be one long school run with about an hour and a half child free!

The first few days Abby was there she seemed to sleep most of the time which was frustrating as we’d been on the waiting list since she was born and were desperate for her to have the input. But we’ve just started a new feeding regime which means that she’s now fed for twelve hours overnight with four smaller feeds during the day. This seems to have improved her night time sleeping and she does seem to be more alert during the day. This regime also seems to have the added bonus of a reduction in the need for suction which is fantastic news. Since Christmas we have noticed her needing less and less suction and now we can sometimes go up to three days without having to suction her, whereas at one time we would’ve needed to do it after every feed.

We have also seen small improvements in Abigail's development. Her head control is much better now – she still had a very strong head turn to the left but she does move her head much more now and with better control. Last week Nix accidentally cut the top of Abby’s thumb whilst trimming her nails and for the first time in months Abby cried. In fact she positively sobbed with real tears and with quite some intensity! Nix was obviously distraught because of the pain inflicted but also overjoyed that she expressed it! Since then a connection seems to have been made in her brain and she has cried more frequently, showing definite disapproval of being undressed, put in the car seat, etc. She’s also become more consistently responsive to specific stimuli. For example she tries to smile when we rub her hands and she has learned to anticipate this with “ready, steady” and “1, 2, 3”.

Abby is not as ‘tactile defensive’ as she once was. She’s had to get used to sudden hugs from elder siblings and the noise they make no longer seems to surprise her. She used to be very oral sensitive but she’ll now allow us to touch her mouth and give her kisses much more readily. We are hoping to give her some tiny tastes of baby food soon but this is more for the experience than the nutrition.

Abby continues to surprise us with her tenacity. She has not succumbed to the colds that many of us have had this winter. The one or two she has had have not presented her with too many problems even when they have gone to her chest and antibiotics have been required. We had a regular out-patient appointment with Dr Hughes (Abby’s paediatric neurologist) at Guy’s yesterday and she was very happy with Abigail’s progress. She slightly increased one of Abby’s five medications, but this is simply because Abby has put on so much weight.

All in all, although life can be difficult and emotionally and physically demanding, we are coping the best we can in the circumstances. Rebekah and Joshua are very happy and seem well adjusted. They’re aware that Abby is different to other children but seem to be unfazed by it. To them she is just their little sister Abby and they adore her. Long may that continue.

Abby stands up (sort of...)

2005-01-17T11:06:00.000Z

This photo shows Abigail being worked hard by her physio, Rachel. With a little assistance, quite some time and an enormous amount of effort on Abby’s part, she can support almost all her weight on her feet and lift her head up too. This is very good for her as it strengthens the severely under-used muscles in her legs and feet.

We had a good Christmas and Abby has only succumbed to one cold and chest infection so far this winter. She was in hospital for just 20 hours but got over it very quickly indeed. She is very well and stable at the moment and we were able to visit the Demelza House children's hospice in Kent for a few days at the beginning of January which was a wonderful time away together. Abby is also soon to begin two full days a week at an early intervention nursery. This will offer her all the fun and activities of an ordinary nursery but with all her main therapies performed there including physio, speech and language, postural management and wheelchair services. She will also be able to have intensive hydrotherapy every week.

Four months at home and doing well

2004-10-21T20:28:00.000Z

It was the end of June that Abigail was last an in-patient in hospital, so we’ve had a really good summer with her and a long period of relative stability. Abby’s day to day nursing care at home continues to be reasonably straightforward. Her feeding and medications have very much become routine and she generally sleeps well at night. Even if she does wake, she doesn’t make any fuss and we rarely get up to her.

We do think that Abby has progressed a little in her development. Because she is cortically blind, her hearing seems to be very acute and she certainly responds and reacts to voices, sound and music. It’s difficult to know if she recognises specific voices but we do spend a lot of time playing and talking to her. Abigail has an audio cassette of music and simple exercises which is part of her bedtime routine, and she clearly recognises some of the music and appears to ‘enjoy’ some of the actions. Occasionally during exercises like helping her to clap hands to music she will gently open the fingers on her hands, or when we help rub her hands together she will seem to clasp her hands at the right points. We also believe that Abby is trying to smile sometimes. It’s very likely that neuro pathways for certain reactions are either damaged or crossed, so when she begins to turn up the corners of her mouth slightly but then goes on to yawn it seems probable that this is an attempt to smile, particularly as it often occurs as an appropriate response to what we’re dong with her. We’re also gradually adding to our own collection of flashing lights and tactile toys to aid Abby in her ‘sensory’ experience.

Nix recently took Abigail up to Guy’s for a regular out-patient appointment with Dr Hughes, the neurological consultant in charge of Abby’s epilepsy and cerebral care. She was very pleased with her progress in terms of the fitting. At the moment, although there is some occasional background twitching and 'clonus' movement, her ‘fitting’ seems to be limited to very short self-resolving episodes when she is coming in or out of sleep. Once again, Dr Hughes explained that it’s still difficult to say whether this fitting is actually epileptic in nature or just part of her limb disorder and the nature of her brain damage. Overall, she felt that increasing Abigail’s anti-convulsant drugs was not worth the increase in possible side effects and so all of Abby’s medications have remained unchanged. It was again explained to us that the winter months could prove difficult and risky for Abby, with the increased chance of infections and pneumonia.

With regards to our long-term concerns over Abby’s changing (and abnormal) head shape, we are continuing to push for a scan of her head despite the reluctance of some medical staff to explore this. Thankfully, both of Abby’s two consultants are sympathetic to our concerns. We’re expecting an appointment with a neurosurgeon to come through soon.

Another great development which we mentioned briefly in our last update is that we’ve been accepted onto the books of Demelza House children’s hospice in Kent. This is a completely charitable and self-funded centre which cares for children with life-limiting illnesses or conditions. We have been allotted a maximum of 21 days stay a year at Demelza House, which can take up to eight children at a time in its extensive facilities. We can use the centre as respite care for Abigail where we leave her there, or as a mini break where the whole family can stay. We were incredibly impressed with the centre which has amazing facilities and resources. It is not at all how you’d think of a hospice. All the rooms are beautifully decorated and homely, there is a large communal dining room and kitchen with meals laid on free for all visitors, there are extensive en-suite family rooms, an art room, a brilliant multi-sensory room, a soft-play area, a quiet chapel, extensive grounds and sheep and goats. The dedicated staff provide many days out and themed activity weeks and are able to cope with all the day to day nursing requirements of each child. We came away so impressed by the ethos and care on offer at Demelza House and have already submitted a selection of dates around Christmas time when we will stay there as a family for our first visit.

We’ve also had a number of meetings with the local Postural Management team, who work closely with Occupational Therapy to oversee Abby’s seating and pram requirements. We’ve just got a new special needs car seat but the team are looking into options for a pushchair that’s both compact and manageable and yet offers her the postural support she needs. The best option at the moment looks like costing around £2000 but the local authority wheelchair service do not have the funds for this so Occupational Therapy are investigating getting funding from local charities. Even this will be means-tested so we may well have to meet a proportion of these costs.

All in all, Abby is very well at the moment. We are really enjoying having her at home and those months with her almost permanently in hospital seem like a long time ago now. It won’t always be this good but we’re making the most of it while we can. And whilst we’ve all long since bonded incredibly close to Abigail, we’re now beginning to think we might be making inroads into the type of relationship we’ve always longed for with Abby – one where we know that the life we offer her and the input we give makes a difference and makes her happy. That’s all we ever really wanted for her.

With that in mind, we’ve been thinking once again about the possibility of moving house within the next year or so. Matt still needs to be able to commute into London, but we’ve been considering moving further out into Kent. We’d like the children to grow up away from the smog of the city if we can and we’ll need to move for Abigail soon anyway. We’ll probably need a four-bedroomed house with a ground floor room for Abby, and with prices continuing to rise beyond our means it won’t be easy to find somewhere. In the meantime we’re relatively happy where we are.

The photos are of Abigail (1) sleeping peacefully this evening (top), Rebekah (5) on an official ‘Bad Hair Day’ for her school, and Joshua (3) with his hair spiked on the same day.

Abigail is one year old

2004-09-17T11:03:00.000Z

Yesterday Abby defied the worst-case prognosis from doctors and celebrated her first birthday. We decided to take her out for the day as a family and made the trip up to London to visit the Science Museum. OK, so the venue was aimed more at Becky and Josh (and Matt!) but it was really nice to just to be out for the day together. Abby continues to do well at home, although today she appears to be getting the beginnings of a cold.

We are currently being given support by our physiotherapist, homecare team, occupational therapist and a postural management clinic about the next stage of Abigail’s car seating and special needs pram. We’ve also recently been accepted for support by a very specialist paediatric hospice in Kent. This excellent resource enables us all to stay for a few days as a family with activities and stimulation for Abby and the other children, or for us to use the centre for respite care for Abigail whilst we go away for a time. The quality of care and support there is widely acclaimed so it’s good to have that available to us. The photos were taken yesterday to mark Abby’s birthday.

EEG encouragement and gastrostomy scare!

2004-09-01T13:36:00.000Z

Abby is still at home and we’ve now broken the record for the longest time without a hospital admission – she’s been home for almost ten weeks. We feel as though she now lives at home and occasionally has to make hospital stays, rather than her staying at hospital with the occasional home visit!

The end of July was a period of instability with Abby’s fitting so it was decided to conduct another EEG scan. This measures the electrical activity on the brain at rest and during a seizure and can help locate the specific area that is seizing. As has happened before, Abigail didn’t do her ‘best’ fitting when she was hooked up to the machine but doctor’s did get some useful results. There certainly was a measure of epileptic activity during a seizure but more interesting was the ‘at rest’ measurement. Doctors told us that previous EEGs showed Abby’s brain to have “very slow” general activity – as if asleep – even when she was fully awake. This indicated severe immaturity in her cerebral development and essentially meant that she was almost vegetative in her brain activity. This most recent EEG clearly indicated that her brain was operating with a “more normal” pattern akin to thinking as opposed to sleep. This was described as a definite “maturing” of the brain and doctors said this was “reassuring”. We’d like to think that the stimulation and exercises we do with Abby have contributed to this. Certainly, she seems to be responding more to things – she still really enjoys her BeActive box.

We also have a ‘body awareness’ cassette which consists of music and actions which we take Abby through before bedtime. These are designed to stimulate responses to music and have actions to help her discover her hands, feet, head and limbs. We’re sure we’ve noticed her expression change when she’s doing these exercises. She appears to recognise certain music and will often respond to movement of her limbs. We’re also wondering whether she is sometimes trying to smile. Every now and then she begins to change the muscles around her mouth when a smile would be an appropriate response, but then goes into a wide yawn. This could well be due to the mismatched ‘wiring’ pathways in her brain – a major result of her brain damage – which mean that a displayed movement or expression may not necessarily be the one Abigail had intended.

After a mishap in hospital where a probe was incorrectly inserted into Abigail’s oesophagus, we eventually got the results of another pH study. This measures acidity rising abnormally from the stomach into the oesophagus. Although reflux was largely corrected with surgery back in February, it’s thought she may still be suffering from discomfort and that it may even be triggering fitting episodes. The results showed that there was still some reflux but it isn’t considered bad enough to be a major problem.

We had a bit of an emergency on August 9th when Abby’s gastrostomy peg came out from her stomach! It all happened at a difficult time – Matt was stuck at work in London and Nix was at home with three children at teatime needing food. Meanwhile, Abby had not long been fed and now had a small hole in her tummy leading directly to her stomach! After surgery to fit the peg, we were told that if it ever came out we must get Abigail to the nearest A&E as quickly as possible. Apparently, the level of healing in infants is such that the hole will begin to close over within half an hour! Eventually, Nix struggled to Lewisham hospital where a new gastrostomy device was fitted. We still don’t know how it came out. Abby – who was in no distress at all during this – may have simply yanked it out. In another step towards her nursing proficiency (!) Nix has been given a spare peg and told that there would be no harm in her attempting to re-insert it should it ever happen again.

Abby is still fitting occasionally but they’re not major seizures and seem to resolve themselves in a matter of seconds. She is sleeping OK at night although she does wake for long periods sometimes. We often hear her murmuring, but since she doesn’t really cry at all we’re just about getting enough sleep. We had a great week away in Sussex recently and it was good to have a small holiday with all three children there. We’re also going away for a weekend to CenterParcs soon.

We had a regular out-patient appointment with Abigail’s consultant at the Queen Elizabeth hospital just last week. This was a normal check-up but we did continue to explore the possibility of a CT scan of Abby’s head. The back of her head is growing oddly but doctors say this is caused by uneven growth under the skull due to the brain damage. Despite the wealth of medical opinion against us we feel that there may be more to it than that. Abby’s head was never quite right from birth, which by all the best estimates was just a day after the insult to her brain – clearly not enough time for her head to have begun to grow irregularly. Abby’s consultant was sympathetic and sent her down for an x-ray there and then. In a comparison with an x-ray taken in January, the growth at the base of the skull has clearly increased in size. It’s proving difficult to persuade doctors to give Abigail a CT scan, but our local consultant will attempt to fight our case over the next few weeks. We also asked whether there was any change to Abigail's prognosis and long-term outlook. There isn’t really. It’s been easy to be lulled into a false sense of security because she’s been relatively well and at home for quite a while now. But doctors say that estimating a life expectancy for Abby is incredibly difficult, and she could still develop very serious and potentially life-threatening problems very quickly indeed. Abby’s consultant agreed that the winter months "will be difficult".

Abigail Erin will be one year old on September 16th. It’s been an amazingly tough and long year. Given that the very worst case scenario at Christmas was that “she might not make it to her first birthday”, we think Abby’s done rather well. She is clearly an extremely strong fighter. We all love her to bits and are incredibly fortunate to know her and be caring for her, and she brings us a lot of pleasure. We just hope that we are able to bring her some too.

Still at home and doing OK

2004-07-29T10:25:00.000Z

Since coming home from her last stay in hospital around a month ago Abigail hasn’t been quite so settled as she was before and is still having periods of what looks to be fitting.

We had a useful meeting with her consultant neurologist at the beginning of July who studied some video we took of Abby’s fits. She felt that they may not actually be epileptic in origin but instead may still be caused by some level of reflux, or at least an overproduction of acid in the stomach. She suggested another EEG to be done and another pH study. The EEG monitors brain activity during a ‘fit’ so that the location and nature of any seizures can be identified and the pH study will determine whether Abby is still suffering from reflux, where stomach acid overflows into the oesophagus and causes heartburn. As Abby is currently quite unsettled Guy’s Hospital arranged for an urgent EEG to be carried out yesterday and she will have a pH study done next Monday. Hopefully by the end of next week we may have a clearer picture of exactly what is happening.

As far as Abigail’s development is concerned she still hasn’t made any significant progress although she is getting a lot of input from us and various health professionals. She has had some good physio sessions recently, has been less resistant to being handled and has shown more effort to explore her surroundings. Abby has been loaned a BeActive box by the vision impairment service. This is like a posh baby gym; a three-sided box with a perspex lid from which you hang interesting objects. Once inside the box all outside background noise is shut out and any noise Abby makes is amplified. She seems very content ‘playing’ in there and has consistently reached for some objects.

We are hoping that Abby will soon be placed at an early intervention nursery where all of these services will be combined and they’ll deliver a complete programme of stimulation for her. She will probably go for two days a week. The waiting list is long but Abby was referred at just one month old so hopefully she won’t have to wait too long. We’re really enjoying having her at home and although it’s hard work at times we feel we’re coping very well with her care and trying to have a normal family life. Rebekah and Joshua adore her and always have lots of cuddles for her. In fact when we commented to the physiotherapist that Abby wasn’t as jumpy as she had been, she extolled the virtues of “Josh therapy”!

Abigail home - but we're not sure why

2004-06-24T18:46:00.000Z

Quite a bit of confusion this afternoon when Nix went in to the hospital to visit Abby. In an uncharacteristic breakdown in communication, Nix was told that Abigail would be going home today and was asked whether she’d received a phone call to let her know. We hadn’t. Nix returned home to get Abby’s things ready and then went back to the hospital to collect her, still none the wiser as to the rationale for discharging her after her big epileptic seizure yesterday.

Nix tried to speak to a doctor but none were available. Nurses explained that they had taken a blood sample on Tuesday to check the levels of medication in Abby’s blood and although they were lower than expected, dosages had been increased and these would take a few days to work into Abby’s system. We also understand that Abigail had passed the test of going another 24 hours without a major fit, but we remain a little concerned that there was a major seizure yesterday after nearly 48 clear hours. We wonder whether Abigail can really be described as ‘stable’ after just another day. We were also told that the QE would liaise with Guy’s again before Abigail was discharged and we’re not sure whether this has been done.

Obviously it’s great to have Abby home and Becky and Josh were very excited to see Nix arrive home with her this evening. But for the moment it remains a bit of a mystery for us why medical staff felt that a discharge was appropriate today. Neither of us particularly want to end up at A&E tonight if Abigail is still susceptible to major fitting. Only time will tell, of course. Hopefully we’ll be able to get the full facts from Abby’s consultant over the next few days and we have an appointment with her next week anyway. In the meantime, it’s lovely to have her home again and we hope we get another long stint together as a family. The photo above was taken just a few minutes ago and it shows a very proud big sister Rebekah with a not so little sister Abigail!

Staying in hospital after all

2004-06-23T16:17:00.000Z

We spoke too soon! Just as Nix was packing Abigail’s things away to prepare for her discharge from hospital this afternoon, Abby suffered an unexpectedly long epileptic seizure that required drug intervention to get under control. Having not had a major fitting episode in 48 hours it was felt that Abby was ready to come home, but obviously this seizure has meant that doctors have reluctantly decided to keep Abby in for the time being. They are unable to offer any idea as to when she might be allowed home at this stage – it really depends on how she is over the next few days. Clearly this is very disappointing for us, and particularly so since it had seemed to make sense that Abby got better quite quickly because her regular medication had been adjusted. Now she’s had another major fit it may be sometime before Abby’s epilepsy can properly be considered to be ‘stable’ again.

Abby coming home today

2004-06-23T12:15:00.000Z

After almost a week in hospital Abigail is being discharged from the QE this afternoon. The seizure episodes of the last few days have calmed down considerably and although she’s had the occasional minor fit lasting a minute or two, she’s been awake and alert again in the last few days. She’s needed no emergency drug intervention for around 48 hours now. Doctors increased some of her regular medication at the end of last week and feel it’s likely that Abby had simply outgrown her drug dosages. We’re looking forward to getting her home again – it’s been hard having her back in hospital after six weeks at home, but we’re glad that she didn’t have to spend too long on the ward this time.

Improvement this afternoon

2004-06-20T20:39:00.000Z

Nix and I visited Abigail this afternoon and she seemed a little bit better. We were there for around an hour and Abby was awake and didn’t have any major fitting episodes. That’s the first time we’ve seen her awake and not fitting since Thursday. We weren’t able to see a consultant today but will try to tomorrow. Hopefully all this means that the increases in Abby’s regular medication that were put into place on her admission are beginning to take effect. The quality and care of the nursing at the QE continues to impress and reassure us. Despite the fact that two of Abby’s favourite nurses have moved on to other departments or hospitals, we know that she is literally amongst friends there. All the same, we’d like her home again soon...

No change: seizures still a problem

2004-06-20T08:42:00.000Z

Unfortunately, Abby’s renewed seizures have continued since she was admitted to the QE again on Thursday evening. Essentially, she is back to the stage where she is never awake and not fitting. Nix and I visited on Friday evening and Abigail was either having a major seizure or cluster fitting for over two hours whilst we were there. Lorazapam, Diazapam, Paraldehyde and Midazalam are all being administered in an effort to stop the fitting, with very little indication as to which (if any) of these drugs is actually working.

Although Abby’s heart rate increases when she is fitting, her overall heart rate does seem to be less than it was a few months ago – probably an indication of her increased weight and the fact that she’s older now. When she’s sleeping, nurses have even become slightly concerned that it’s dropped quite low on occasions. Abigail currently has an IV cannula in so that drugs can be given straight into the bloodstream, is being monitored for heart rate and oxygen saturation and is also being offered oxygen as and when she needs it. The hospital are maintaining contact with neuro consultants at Guy’s who have overall responsibility for Abigail’s epilepsy care. There is still a possibility that Abby will be transferred to Guy’s if her condition doesn’t improve over the next few days. The photo is of Abby with her community nurse just a few days ago.

Abby in hospital yet again

2004-06-17T22:44:00.000Z

After almost six lovely weeks at home with us, Nix took Abigail to our local hospital A&E this evening because of concerns that she has been fitting again. We’ve noticed over the last four or five days that she seems to have started having seizures again and have spoken several times with medical staff from Guy’s hospital about what to do. We spoke to them again today after several ‘cluster’ fitting episodes and neuro consultants there advised us to take Abby to A&E with a strict protocol to follow.

On arrival at the paediatric A&E Abby suffered a very severe epileptic seizure, the likes of which we haven’t seen since she was in intensive care at Lewisham hospital several months ago. Frighteningly, the crash team were called and doctors rushed to get an IV line into Abigail so that anticonvulsant medication could be administered. After a number of doses of different drugs, Abby seemed to calm down a bit but needless to say, she has been admitted tonight and Nix is staying with her for the moment. Unless this new cycle of fitting can be broken quickly, it’s our own judgement that Abigail could well be moved up to Guy’s again. I’ll update with more news tomorrow. The photo is of Abigail in the garden at Joshua's third birthday party just four days ago.

Chest infection - but not too serious

2004-06-03T13:43:00.000Z

You know how it is. You don’t get an update for weeks and then two come along at once. We just wanted to update you on some minor news this afternoon. Abby’s chesty cough seems to have got quite a bit worse in the last two days which is no surprise as the rest of the family have had colds and throat infections – three of us are on antibiotics!

Yesterday we asked our community homecare nurse to come and give Abigail the once over as we suspected the beginnings of another chest infection. He confirmed that there did appear to be some mucus in the base of each lung and suggested that we see how she was overnight. In the meantime he booked an appointment for this morning at the emergency day clinic so that we wouldn’t have to wait in A&E if she needed to be brought in. Doctors reiterated the important signs to look out for, particularly laboured breathing. Abby was clearly nowhere near as bad as her last infection, but we did want to catch any new development early on this time. Unfortunately, we didn’t have a great night. Abby was awake and restless until around 5.30am and although she wasn’t particularly laboured in her breathing, we did feel that the ‘bubbly’ noises and coughing were getting worse.

Nix took Abigail to the clinic this morning and was fortunate to be seen by Dr Lord, who is Abby’s consultant. After a thorough examination she felt that there was indeed the early signs of a chest infection but that it was nothing like as advanced as on the last occasion. Abby has therefore been put onto a course of antibiotics but has not been admitted. We are to keep a close eye on her at home over the next few days, but doctors expect the treatment to fend off any worsening infection. At the moment we only see this as a minor setback and feel happy that we were justified in alerting the medical staff when we did.

Abby better and home once again

2004-06-01T23:10:00.000Z

It’s been a long time since we last updated you on the progress of our daughter Abigail – some three and a half weeks, in fact. You’ll be pleased to know that despite the lack of updates, no news has been good news. Abby was discharged from Guy’s on Saturday 8th May and has been at home with us since then. We’ve been making efforts to get out and about as much as possible in the last few weeks and Abby has enjoyed days out at the park, by a river, walking in the woods and with Becky and Josh in our garden. It’s been lovely to have her at home as part of our family. Rebekah and Joshua are incredibly fond of Abby and are always giving cuddles and ‘help’ with visual and aural stimulation. Becky is particularly proud of showing off her little sister to anyone who hasn’t met her, as well as to people who already have!

Abby has continued to put weight on well. The feeding and drug regime at home are relatively straightforward and we’re really only getting up to her once or twice a night. It’s a bit different right at the moment as everyone except Abigail seems to be struck with a particularly nasty cold and throat infection. There hasn't been any overt or serious fitting since she’s been home, although there has been some distonic stiffening in her limbs from time to time and the occasional jerky reaction. These seem to be well within our day to day expectation of how she behaves. We’ve had numerous home visits from physiotherapists, community care teams, visual impairment and speech and language therapists, all playing their part in providing assistance, support and practical instruction in Abigail’s care.

We did have a bit of a scare on Friday 14th May when we took Abby to A&E with another suspected aspiration and chest infection. Fortunately the x-ray came back clear and it’s simply proved to be a bit of a chesty cough. Of course, we constantly live with the very real possibility of another aspiration and infection of her lungs, especially with Abby’s continued excess secretion problem. At the moment, we’re regularly having to suction Abby’s mouth, nose and throat so that she doesn’t inhale any mucus.

All in all things are going very well. It seems a long time since Abby was in hospital and we hope it stays that way!

Three different hospitals in twelve days

2004-05-01T15:58:00.000Z

The last major update on our daughter Abigail was nearly two weeks ago and a lot has happened since then. On 19th April, Abby went into theatre at Lewisham hospital to have a faulty gastrostomy peg changed and to have an exploratory endoscopy in her oesophagus. This was to check that the Nissens surgical procedure on her stomach to prevent her being sick wasn’t too ‘tight’. Abby has been suffering from a ‘backlog’ of saliva secretions in her throat which makes her gag and choke and also led to her very dangerous spell of pneumonia in early April. Doctors were concerned that the Nissens may have been so tight that it was now preventing anything at all from draining into the stomach. The upshot of this was that surgeons found the Nissens wrap to be in perfect order and that there was indeed a suitable opening into the stomach. We were very disappointed with this as it effectively meant that there was nothing surgical that could be done for Abby’s ‘frothing’ problem. That day (19th) was also extremely stressful because it was Rebekah’s fifth birthday and we were all at her party whilst Abigail was in theatre – none of us were able to be with Abby and no one from Lewisham rang us to let us know when Abby came out of theatre.

All this left everyone wondering why it was that Abigail did not seem able to drain her secretions into her stomach. Doctors had suggested that the motility effect of the oesophagus to ‘squeeze’ food downwards had been affected by Abby’s brain damage – but this is not a definite diagnosis and still remains speculation. We were also concerned that yet another general anaesthetic would lead to a significant increase in Abigail’s epileptic fitting, but thankfully she only required a light dose and seemed to come through the procedure OK. We won’t bore you with the details, but we were once again very disappointed with the poor bedside manner and lack of communication of staff at Lewisham hospital during Abby’s second stay there. After a few days Abby seemed to be doing OK apart from a few spurious high temperatures and some slight fitting episodes that seemed to self-resolve. We spoke to a very helpful registrar who discussed the possible options for Abigail in her future care and agreed it was best for Abby to return to our local hospital (the Queen Elizabeth) for a better continuity of care from people who knew her best. The paediatric neuro doctors at Guy’s were also consulted at this time to keep them up to date on Abigail’s progress.

Abigail was transferred back to the QE on Wednesday 21st April where she continued for a while on oxygen supplements to get her over her chest infection. At this time, it seemed ironic that Abby was in hospital at all as there really wasn’t a great deal wrong with her. She was almost fully recovered from her aspiration pneumonia, had got a new gastro peg fitted, her seizures didn’t seem too bad and she was continuing to put weight on. Doctors were keeping her in simply to try and get to the bottom of her secretion problem. During the course of the next week though, Abby seemed to deteriorate quite a bit in terms of her fitting.

After her first spell on the neurological ward at Guy’s hospital in March, she’d been prescribed a drug called Midazalam which was used to stop prolonged fitting episodes. Abigail had not needed this drug at all until a seizure on her last day at Lewisham on Tuesday 20th April. After her transfer to the QE, Abby seemed to be having more and more fitting episodes such that she required Midazalam intervention on several occasions, often more than once in a day. Now the focus changed from the secretion issue to one of battling against recurring seizures once again. In the meantime, we were all aware that without a surgical solution to Abby’s pooling saliva secretions, she constantly lived with the threat of aspirating some mucus onto her lungs again and causing another dangerous chest infection.

Abigail’s fitting was very bad last Tuesday (27th) and she was cluster-fitting all night. This meant that she would fit quite considerably with a very high heart rate and distonic movements for several minutes before sleeping for around one minute. She’d then wake and fit again. Abby was given Midazalam once more and had one of her anti-convulsants doses increased. Doctors were of the opinion that Abby had either put on sufficient weight for her to have outgrown her drug dosages or that the very nature of her fits had changed again and that alternative medications would have to be found. As one consultant put it to us: “Abigail may simply have moved the goalposts again”.

During this period Abigail had been fitted with foot splints and was using a flat lying board, both designed to help with her limb physiotherapy and offer all round body support. Abby had also been taken off oxygen after recovering fully from her chest infection. After her bad night of fitting, Abigail’s consultant spoke with doctors at Guy’s to get their recommendation as to how to proceed with her seizure medication. Guy’s were concerned at the recent increase in seizures and the fact that Abigail seemed to be back to a condition where she was not often awake and not fitting. It came as very little surprise to us that Guy’s wanted to monitor Abby for themselves and so she was transferred to back to the specialist paediatric neurological ward at Guy’s on Wednesday (28th April). This was clearly a setback but we knew that the care and level of expertise at Guys’ meant that it was the best place for Abby to be.

Wednesday (admission day) and Thursday saw Abigail continue to have bad periods of seizure activity. Abigail was given an EEG brainwave scan to monitor cerebral activity before and during a fit, but unfortunately she was reasonably settled during the scan and not a lot of new information was gleaned! Abby will also undergo an ECG scan to monitor her heart next week as doctors are currently a little concerned at the her high heart rate when at rest. She also underwent a chest x-ray to make sure that her lungs are now fully clear of infection and they are. Swabs were also taken to continue to monitor her MRSA infection, one of her anti-convulsant doses was increased again and another medication was stopped altogether.

Yesterday (Friday) Abby seemed a little more settled when we went to see her and Nix and I both had a chance to hold Abby. Although she wasn’t perfectly relaxed, she was awake and not fitting and certainly seemed to respond to speech, music and being held. Overnight there were some more fitting episodes but this morning (Saturday 1st May) Nix took the children in to see Abby and had a lovely morning. Abby was even more relaxed and enjoyed being held and bathed. Having tinkered slightly with Abby’s medication to good effect, doctors have now said that they will keep her dosages reasonably stable for the next week and monitor Abigail closely. She’ll then have a full review of her care at the end of this coming week. A movement disorder specialist will also see Abigail this week and hope to provide some input into Abby’s non-epileptic abnormal movements.

Although this latest period of seizure activity has not been as bad as in the past, we are hoping that the medical staff at Guy’s can once again get Abigail quickly onto a more stable routine and medication regime. We don't yet know what (if anything) will happen over any solutions to her ‘frothing’ secretions problem.

Infection better, but transfer to Lewisham

2004-04-18T23:31:00.000Z

Apologies that it’s been just over a week since our last update on Abigail – it’s been a hectic time with many developments and not a lot of time to write. Our last update was on Saturday 10th just a few days after Abby had been re-admitted to the QE with a chest infection. She’d spent only 48 hours at home with us after her discharge. It was awful seeing Abigail really suffer with the infection: her respiration rate was up to 72 breaths a minute, her heart rate was extremely rapid (almost 200 beats per minute) and Abby was admitted with a temperature of 39.2C (102.5F) which had risen from normal in the ten minutes it had taken Nix to drive to the hospital. She was very sick indeed.

Thankfully she began to respond to antibiotics last Sunday and her respiration, HR and temperature began to calm down. Not only did this mean that Abby was on the mend, but it also cleared up a concern that her chest infection was an MRSA infection. With Abby beginning to respond to conventional antibiotics (and MRSA resistant to those) we knew this wasn’t the case.

As last week drew on and Abby made steady progress in fighting the infection in her lungs, it became clearer just how ill she was on that Friday and Saturday. As we spoke with Abigail’s consultant – who thankfully was the doctor on call when we took Abby back in – it was apparent that Abby had aspirated (inhaled) some of the frothy mucus in her throat. It’d been our suspicion from right after the operation that this was happening because the Nissens surgical procedure to ‘tighten’ up the valve at the top of her stomach was too tight. Although it was effective in stopping Abby’s vomiting, we reckoned that it also prevented anything from travelling down the oesophagus into the stomach. Her secretions (saliva) would therefore simply ‘back up’ and pool in her throat causing her to panic, choke, and eventually aspirate it into her lungs causing an infection. Abby’s consultant agreed that this was exactly what had happened. Abigail had actually suffered from aspirational pneumonia and things had been extremely serious for her until the antibiotics had kicked in. Many months back, we had asked another consultant what it was that Abigail might succumb to in the event of her premature death. He told us that severe epileptic seizures can kill and that infections can also prove fatal – particularly chest infections.

Yet again Abby seems to have fought off another very serious situation. We’ve simply lost count of the number of times that her condition has had the real potential to result in tragic consequences – but she keeps on fighting! The incredible irony of last week was that she had virtually no seizure activity at all during this time – not even with a high temperature.

Towards the end of last week Abby got much better and doctors gradually reduced the levels of oxygen given to help her breathing. With the chest infection all but behind her, doctors now wanted to focus on attempting to correct whatever the problem was with her ‘frothing’ secretions. On Thursday Abby’s consultant spoke with the paediatric surgeons at Lewisham hospital (where Abigail was operated on) to get their take on what might be appropriate. In a very surprising and exceptional case of NHS efficiency Abigail was transferred that same day to Lewisham pending investigative tests. Nix and I were a little anxious about this given our previous poor experience with the care at Lewisham, but we were also pleased that efforts to find a solution to Abby’s problem were moving along quickly. Everybody was concerned that Abigail could very easily aspirate mucus again and suffer another infection unless treated in some way.

Last Friday, Abby was given a barium swallow study which monitors exactly what movement there is through the oesophagus and into the stomach. This showed that there was indeed very little getting into the stomach and also that there was virtually no movement in the oesophagus to ’squeeze’ food and liquid downwards. It’s thought that this natural assistance that the body gives to digestion has been destroyed by Abby’s brain damage.

Tomorrow (Monday) Abigail will go down to theatre once again to undergo an investigative endoscopy and possibly attempt to ‘dilate’ the top of the stomach valve to allow food through. This afternoon we all went to visit Abby. She still has quite a chesty cough but her breathing is almost normal now. She appeared a bit twitchy at times; as though she might be mildly fitting but nothing too serious. We just hope that the procedure tomorrow is a straightforward and successful one. It’ll be another busy and hectic day tomorrow – we need to visit Abby first thing in the morning to see her and give our consent to the procedure, and it’s also Rebekah’s fifth birthday tomorrow with a big party in the afternoon!

Needless to say, any predictions on when Abby might be allowed home again won’t be made until after this next procedure.

Breathing still not good

2004-04-10T21:07:00.000Z

Nix and I went to visit Abigail in hospital this afternoon and although her temperature and heart rate are now under more control, her respiration remains rapid as she struggles to get decent lungfuls of air with her chest infection. Doctors remain confident that the infection poses no immediate risk to Abigail, and in an attempt to allow her more ‘breathing space’ in her chest they have stopped milk feeds through her gastrostomy and have put her onto an IV drip for the time being.

Despite assurances from the doctors that the infection in Abby’s chest is “not significant” we remain a little concerned that her existing MRSA infection may become more of an issue. This is because the two areas that are currently confirmed as MRSA infected are her gastrostomy site and in her sputum. Anyway, Nix is currently at the hospital this evening and will ask these questions and more during the evening ward round.

Two days at home and then re-admission

2004-04-09T13:38:00.000Z

I’m sorry to have to tell you that after just two days at home with us, Abigail has this morning been readmitted to the Queen Elizabeth hospital with a chest infection. Last night that she was having difficulty with her secretions and couldn’t seem to cough up the fluids in her oesophagus. Overnight Abby’s breathing became quite laboured – even in her sleep – and this morning her respiration was sounding very ‘bubbly’ indeed.

On the advice of our homecare nurse we took Abigail back to the paediatric ward where she was then examined by her consultant. By that time she’d also got a very high temperature, high heart rate and increased respiration. Ironically, she doesn’t seem to have had any major seizure episodes during this. Our theory of what is going on seems to be shared by the doctors: that the Nissens surgical procedure used to prevent her from vomiting is now preventing anything at all (including saliva secretions) from going down into the stomach. Eventually a ‘pool’ of secretions backs up into her throat whereupon she gags and gets into difficulty. It’s highly likely that at some point she has aspirated (breathed in) some of this mucus into her lungs and this has caused an infection.

Abby has been given paracetamol for the fever which seems to be lessening now. This afternoon Abby will undergo a chest x-ray to determine the full extent of the infection as well as beginning a course of intra-muscular antibiotics by injection to try to fend off the infection more rapidly. Doctors just don't know how long Abigail will remain in hospital, and we were already aware that infections of this type can potentially be very dangerous for a child with Abigail’s problems as it can be difficult for them to fight infections.

Clearly this is a big set-back for Abby and us. Rebekah and Joshua had particularly enjoyed having Abby home and Becky was very unhappy that she had to go back into hospital again. At least we know that we did the right thing by taking her back when we did and that she has brilliant medical staff caring for her who know and love her. We were also fortunate that it was Abby’s actual consultant who happened to be the doctor on call on the ward this morning.

Needless to say we really enjoyed those few days at home with Abby and we seemed to be managing fine caring for her. She was a delight to have in the home with us and Becky and Josh really doted on her. We just hope that Abigail can overcome this new obstacle and get back home to us again soon.

Abigail home at last

2004-04-06T17:17:00.000Z

After 99 continuous days in three different hospitals, Abigail was finally discharged from the Queen Elizabeth Hospital in Woolwich this afternoon where we all went to meet her and bring her home. Needless to say we’ve also been given a whole box of medicines, medications, creams and other medical equipment, but today is a big day for us as Abby rejoins us once again in the family home. Nix and I are very excited that we can now begin to get on with life as it will be with our three lovely children. Rebekah and Joshua are also thrilled about Abby being home and have wanted cuddles and kisses with her ever since we walked through the door.

Abigail will be seven months old this month and has only spent seven weeks of that time at home. We’re hoping that this current stable phase lasts a good long while – it’s unlikely to be her last stay in hospital, but we plan to enjoy this time with her as a complete family for as long as we can.

Coming home tomorrow

2004-04-05T11:52:00.000Z

Abigail has had a very settled time at the Queen Elizabeth hospital since she was transferred from Guy’s nearly two weeks ago. In the last week she’s experienced little or no seizure activity and been calm and placid. Swab tests indicate there is still an MRSA infection in her abdominal gastrostomy site and she’s occasionally had a slightly higher temperature thought to be linked with that infection. Generally though, Abigail seems to be in another phase of calmness and stability.

It’s great to see her awake and alert when we visit and she’s often seemed much easier to hold recently. Her spasmodic ‘extensions’ and limb movements appear to have subsided somewhat. Despite her apparent lack of outward expression or interaction, Abby clearly loves her bath times – she goes all wide-eyed and relaxed when in the water!

In terms of her feeding, Abigail has progressed with this too. She’s now off a continuous pump feed and is on 95ml of milk every three hours which is gravity fed through a large syringe into her gastrostomy. It only takes around fifteen minutes to complete. Abby has seven feeds a day which means a six hour break between midnight and 6am. Given that before her operation she could only handle 33mls over an hour, it’s great that her feeding is now almost up to what she should be getting for her age. She’s also finally begun to put some weight on with all that milk and now weighs 13lb 7oz – she’d been static at around 12lb since January.

Given her recent progress and stability, doctors have decided that Abigail will be discharged from the QE to come back home tomorrow (Tuesday 6th). We’re obviously very excited about this and it’s a major milestone for Abby and us. Clearly this is unlikely to be the last spell in hospital for Abigail but we plan to enjoy and make the most of this next phase at home. Becky and Josh are also very excited about Abby coming home. Yesterday Nix and I spent much of the day cleaning and tidying Abby’s room and preparing all the sensory lights, mobiles and toys for her cot side.

Obviously we know that the long-term prognosis for Abigail hasn’t changed. One way to describe her at the moment might be that she’s simply more stable. Her fitting seems to be under as much control as can be expected and her feeding is doing well. We are now at the point where we feel able to care for her at home. It will undoubtedly be tough with three children at home (particularly at the start of the Easter holidays!) but we feel as prepared as we can be. Just as Abby seems to revel in the experience of her bath times, we hope that as a family we are soon able to offer her many more rich and diverse experiences of life for as long as we’re blessed with her.

Abby back at the QE

2004-03-28T21:17:00.000Z

The last update on Abigail was 9 days ago. At that stage she was back on the neurological ward at Guy’s hospital in London after a spell in the Paediatric Intensive Care Unit. After that the severity of her seizures seemed more under control and Guy’s even talked of transferring her back to our local hospital (the Queen Elizabeth in Woolwich) the following Monday 22nd.

Unfortunately, Abby had quite a bad time the day after my update and was fitting and restless for much of the day. Needless to say, any plans for a quick transfer were put on hold. Some of Abby’s medication was again adjusted and she had another peaceful day on the Sunday. After some good days with little or no seizures Abby was finally transferred back to the QE last Wednesday 24th. Staff on the children’s ward there were really pleased to be able to care for her again and although we’d obviously rather have her at home, we knew that Abigail was amongst ‘friends’ again.

This week Abby has generally been well with few seizures although she was a little restless yesterday. Swab results from Guy’s and the QE have both confirmed that Abby still has the MRSA hospital 'superbug' and that it’s now infected her gastrostomy site quite heavily. She’s had an intermittently high temperature for the last two days and is on paracetamol – this is likely to be linked to the MRSA infection. In practice this is still unlikely to affect Abby too much, although there is clearly the risk that the infection can spread and cause other complications. The QE are much, much more strict on MRSA infection control than either Lewisham or Guy’s ever were. Abby is in a separate room with the door shut and all persons (staff or visitors) must use gloves and gowns and wash hands thoroughly when entering or leaving the room. Clearly this is mainly for the protection of other patients, but illustrates the proper working practices being put into place.

Abby’s heart rate is often high even when she doesn’t appear to be fitting. This could be due to her infection, her ‘frothing’ secretions problem or simply due to wriggling! Generally she certainly seems more settled. She’s still on a continuous 20 hour feed with two 2 hour breaks a day and the care plan is simply to get her medication, seizure control and feeding to a stage when it’s manageable for us at home. Doctors did initially think that Abby may not spend too long at the QE, but we may have to wait and see how much of a problem the MRSA is first. Also:

One of Abby’s main anti-convulsant drugs – Phenobarbitone – has now been withdrawn and another of her original drugs Phenytoin will shortly be reduced too. Other more appropriate medication is now being offered since the nature of the fitting seems to have changed.
The ‘pooling’ of secretions in Abby’s throat which often leads to a short period of choking seems to have subsided a bit. A surgeon at Guy’s who examined Abby felt that it was simply wind that was finding it difficult to escape from the stomach post-operation. Abigail now has her gastrostomy ‘winded’ regularly!

The photo shows Abby back at the QE hospital having reached six months old!

A better few days

2004-03-19T09:57:00.000Z

Things have improved with Abby quite a bit since I last updated you. After being admitted to Paediatric Intensive Care again on Sunday, Abigail spent two days there whilst being closely monitored on very high doses of drugs. Thankfully, she didn’t have to be completely put to sleep or ventilated in order to stop her major fitting. She was started on a new steroid medication to help with her seizures and also given an IV infusion of Midazalam – another new temporary drug designed to stop the convulsions. Whilst on the PICU ward on Monday, Abby was given another EEG scan which seemed to conclude that not all of her abnormal movements may necessarily correlate with actual fitting. Whilst this seems good news, it makes the job of interpreting what is fitting and what is not more difficult for nursing staff!

After a bad day on Sunday, Monday and Tuesday morning, things seemed to be calm down a bit and Abby was taken back up to the neuro ward. It was felt that she didn’t require intensive care because she was maintaining her airway and vital observations on the medication given to her. Once up on the ward, the Midazalam infusion has been gradually decreased and last night was stopped altogether. Another major change in her drug regime was taken whilst on PICU. Abigail will be weaned off her long-term anti-convulsant drugs Phenobarbitone and Phenytoin. It was decided that whilst these drugs have worked in the past for Abby, they’re now proving ineffective against the severity of her current seizures. Instead she’ll be given Epilim, another anti-convulsant that is thought to be more appropriate for the sort of seizures Abby has had recently.

The good news is that the combination of all these changes has meant that Abigail has had a really settled time for the last few days. In fact, there hasn’t been one major seizure since Wednesday and no intervention required. She’s been awake and alert and we’ve been able to pick her up and cuddle her quite a bit. On Thursday Abby was taken down for an ERG eyesight test, the results of which are yet to be confirmed, but the technician there seemed to be making positive noises. All in all, Abigail once again seems like a different child to the one of the last two weeks. Other brief news:

Abby was weighed yesterday and she has remained static at the weight she was when admitted to Guy's a week and a half ago. This is not really a surprise given that her feeding has had to be cut and she has been fitting so much. Abby is now back on reduced feeds with no IV fluids.
A CT scan of her skull will not now be undertaken – an examining radiologist felt that there was not enough justification for a scan and that any abnormality in the shape of Abigail’s head was explained by the brain damage sustained before birth.
On Tuesday Nix spoke at length with Dr Hughes, the senior Paediatric Neurologist in charge of Abby. The consultant was encouraged by the difference in Abigail since she last saw her in January, despite her current problems.
Abby is still having problems with saliva pooling in her throat which leads to choking and the need to be suctioned. This appears to be a direct result of her operation, and this will be proactively investigated by a surgeon to see what might be done about it.

At the moment it looks as though the rollercoaster is trundling along in Abby’s favour! We’re just hoping that she gets a good rest from the constant seizures of the last few weeks.

Seizures increasing - Abby moved to PICU

2004-03-14T23:38:00.000Z

I last updated you on Tuesday when Abigail was transferred from Lewisham to Guy’s hospital in London. The first half of the week was reasonably quiet for Abby but her fitting has spiralled out of control again these last few days. On Wednesday she had another EEG brain scan which will be repeated again tomorrow (Monday) because her fitting movements meant that readings were difficult to gauge for any length of time. What was noted was abnormal activity on the left side of the brain during seizures. In addition there were some occasions where Abby had some ‘abnormal’ physical movements that did not correspond with any abnormal brain activity. This seems to suggest that some movements may not necessarily indicate epileptic fitting in themselves. Having said that, the overt physical manifestation of Abby’s seizures has increased and become much more obvious over the last three days or so.

It’s been clear to see that Abigail has become more and more acclimatised to her seizure intervention drugs over the last few weeks. Whereas a month ago a dose of Lorazapam would leave Abby settled for a good 24 hours, it has gradually become less effective. These last two days have seen Abby fit a lot more and respond very little to many of the drugs that used to work for her. Both Paraldehyde and Lorazapam have been administered without much effect and doctors don’t want to continue with a care plan that no longer seems to adequately control Abigail’s seizures.

Nix and I went to visit on Saturday and were with her during a one hour episode. She would seize for 10 minutes before coming out of the fit for a minute or two and then regressing back into a seizure. Abby’s feeds have been increased again this week to the highest level they’ve ever been, but virtually all her energy is being spent on the relentless fitting and so there’s still very little chance of her gaining weight soon.

Abigail fitted almost continuously from late Saturday evening all the way through to this morning (Sunday) and we were called by the hospital to be told that Abby would be moved from the neurological ward down to the Paediatric Intensive Care Unit at lunchtime today. This was because Abby really needed to have much higher loading doses of drugs which required constant one-to-one nursing. With doctors running out of options to control the seizures, a last resort would be to deeply sedate Abby to stop the fitting and allow her a day or two asleep to rest. The drug doses required to achieve this need constant supervision and can often have an effect on the respiratory system. In fact, if Abigail is put into a very deep sleep to stop the fitting it’s likely that she will be intubated with a ventilator to breathe for her. This could cause other complications later on but may be the only short-term option.

Earlier this evening Abby was given yet more loading doses of Phenytoin to try to increase the levels of the drug in her blood and an IV infusion of another sedative was also increased. We have just rung the hospital (at 11pm) and thankfully Abby has been asleep, settled and not fitting since 8pm tonight. So far she is maintaining her own airway and is breathing without any assistance.

Other brief news:

Abby is a separate cubicle in PICU because of her MRSA virus – more swabs have been taken to see if she still has it and results are expected in the next few days.
Once Abby’s fitting has subsided a bit more, a CT scan of her skull will be undertaken. Nix and I have expressed concern at the abnormal shape of the back of Abby’s head – doctors have agreed that it’s not quite right and this will be checked out to examine whether it might be a contributing or causal factor in her fitting or brain damage.
Despite Abby’s feed being increased this week she’s now back on intravenous saline fluids whilst the stronger sedative drugs are being used.
We hope to meet and talk with the senior paediatric neurological consultants at Guy’s on their ward rounds either tomorrow or Tuesday.

Abigail now at Guy's hospital

2004-03-09T12:55:00.000Z

Abigail wasn’t transferred to Guy’s hospital in the end yesterday. A bed didn’t become available until very late in the day by which time transport was unavailable. Instead Abby stayed at Lewisham where she has had a settled time without any major fits and no significant drug intervention. She had a good night last night and was transported with a doctor and nurse by ambulance to Guy’s hospital first thing this morning. Nix has gone up to visit and settle her in and reports she’s doing well and that there’s a great view from from Abby’s 10th floor room overlooking the landmarks of central London! So far the journey doesn’t appear to have affected Abby too much.

Other brief news is that doctors have increased her milk to 23ml/hr continuous feed and that the IV line in her head has come out, so yet another one will have to be put in to her pin cushioned little body! Some disappointing news that I forgot to mention in the last few days is that Abigail is confirmed as having contracted the MRSA hospital 'superbug' at Lewisham. Despite the inflammatory bad press this virus receives, doctors are certain that it will not affect Abby in any overt way and will not make her feel any more ill. It’s also true that given the time she has spent in hospital and the fact that she’s had surgery, it’s not a surprise that she’s got it. Abby is being barrier-nursed (gloves and aprons for all patient contact) but this is more so that the virus is not passed on to other patients.

Imminent transfer to Guy's

2004-03-08T09:52:00.000Z

As you may have gathered, last week was a very difficult time for Abigail and us. Things seem to have improved a little since then; Abby’s care has been reviewed and plans have been changed since my last update.

Thursday was very difficult. I last updated you for the second time that day when Abigail was having another major seizure in the afternoon. Such was the ferocity of these fits that when Nix and I visited at 8pm Abigail had already had as much Lorazapam as she was allowed for that day. This is one of her most effective anti-convulsant drugs. Doctors told us that if Abigail fitted badly at any stage before midnight then she could not have Lorazapam administered. With the frequency of fitting seemingly at about eight hours, we felt sure that Abby was due for a major episode by about 9pm whilst we were there. That evening we were also told that a transfer back to the Queen Elizabeth hospital was definitely on for the next day, Friday.

Thankfully, Abby didn’t fit for the rest of the night. She woke at around 7am on Friday with mild spasms but nothing significant and doctors administered Lorazapam as a preventative measure to stop her going into her a full-blown seizure. Despite that, Abigail had a major seizure at 10am whilst Nix was visiting. It lasted about ninety minutes and was difficult to bring under control, so nurses and doctors decided that Abby’s transfer to the QE should be cancelled for that day – she was simply too unstable to be moved. Later in the day, the paediatric neurologists at Guy’s hospital in London were consulted about the fitting and medication. They recommended that Abby stay on the ward but be given one-to-one nursing and loading doses of Phenetoin. This is the anti-convulsant that Abby had been on from birth and only weaned off very recently because it seemed to have very little effect!

On Saturday Abby was finally moved downstairs to the children’s medical ward where she was unsettled for a while but generally OK. As the last major fit up to this point was 24 hours previously, doctors began to wonder whether the Phenetoin was indeed working this time around. Also on Saturday a major review of Abby’s care was undertaken. In hindsight it was felt that not moving her to the QE had been the right decision, and that she would simply have had similar problems there. A significant factor was that the QE do not have any dedicated paediatric anaesthetists whereas Lewisham do. This becomes important if you have to sedate a child and intubate them with a ventilator and doctors wanted to have the safety net of that option. So the decision was taken to plan for a transfer to Guy’s hospital in central London for today (Monday). This is the specialist paediatric feeding and neurological centre for London and the south-east. Consultants at Guy’s had also been advising on medication and care during last week and Abby’s neurological consultant is based there too. It really is the best possible place for her to be, and although the fitting over the weekend seemed to have lessened a lot in severity, doctors were keen for the fitting to be dealt with by the best people.

Yesterday (Sunday) Abby had another better day. Like Saturday she had some small episodes, some of which were self-resolving and another which required a shot of Paraldehyde to stop. Nurses have been trying to avoid giving Lorazapam simply because Abby has had so much of it. Yesterday evening Nix and I were able to see Abby awake and alert – something we haven’t seen for some days now. We were even able to get her out of her cot and cuddle her and she certainly seemed a lot better in herself. Her eyes were particularly good with very little abnormal movement and she definitely seemed to lock on to our faces occasionally. Abigail is currently on half milk feed and half IV fluids, and the only slight disappointment was that another IV line had to be inserted – this time into her head!

As I write, Nix has just called the hospital to find out the latest. Guy’s certainly want to have Abigail but don’t currently have a bed available. They were expecting to have one for today, but need to see if anyone can be discharged before Abby gets transferred. The upshot is that we still don’t know whether she’ll move today but as soon as a bed becomes available at Guy’s she will transfer there.

A second major seizure today

2004-03-04T16:36:00.000Z

Apologies for a second update in one day, but we have just received a phone call from the ward to say that Abigail has had another major fit this afternoon lasting 45 minutes to an hour. She was again given high doses of anti-convulsants to bring the seizure under control. Moves are definitely now afoot to transfer Abby to the Queen Elizabeth hospital in Woolwich where she has been based for much of her life. Staff there are much more aware of her history, fitting and medication regime than Lewisham. Clearly though, Abby cannot be moved until relatively stable. This evening she is very likely to be moved up to the Paediatric Intensive Care Unit where she will receive one-to-one nursing and monitoring. Later today doctors will decide on the next course of action for Abby’s care.

Fitting much worse

2004-03-04T09:39:00.000Z

Since Abigail’s unexpected major seizure on Tuesday morning her condition seems to have worsened. She was reasonably settled for most of Wednesday but that will almost certainly be due to the large amounts of sedative she received the day before. Nix visited yesterday morning and continued to have some concerns about Abby’s breathing. It still seemed to be quite laboured and her heart rate was generally much higher than usual, even at rest. There were also some more instances of Abby vomiting up frothy saliva secretions and the amounts seem to have increased again. There’s still no real explanation of why this might be, although we do fear that the Nissens surgical procedure has resulted in the oesophagus tube to her stomach now being too tight.

Yesterday evening I went in to visit Abby to the sight of around eight doctors and nurses surrounding Abby’s cot working away to try and stop another fit. During the day, the long central-venous line that had been put into her neck had begun to come out and so that was removed. Although Abigail no longer needs IV fluids to supplement her feeds, doctors felt that she needed the more rapid response that an intravenous anti-convulsant drug could offer. So yet another IV line was inserted and thankfully this time a vein was quickly found in Abby’s foot.

All in all, Abigail fitted for two hours last evening and was status epilepticus – in other words she was essentially fitting continually for that whole time. Earlier in the day her temperature had been a bit high and so overall she had been given Paracetamol, rectal Diazepam and two doses of IV Lorazapam. Extremely concerned at Abby’s condition, I called Nix to the hospital to join me whilst friends came to baby-sit our other children. Only after the second dose of Lorazapam (a particularly strong anti-convulsant) did Abigail settle and come out from her fit. Heavily sedated, she slept soundly for most of last night.

I am on nights this week at work so I rang the ward at around 6.30am today to find out how Abby’s night had been. Unfortunately I was put on hold for a minute or so – I was told that doctors were with Abby and that she was fitting again. In the past when Abby has been given Lorazapam she has normally slept very deeply for a good 18 to 24 hours afterwards. It’s very worrying then, that Abigail should fit so heavily less than 12 hours after two doses.

After speaking to a doctor I managed to leave work early and drive back home. We rang in for another update at about 7.30am this morning and Abigail was sleeping after very large does of anti-convulsants. Her fit this morning had lasted an hour. Initially, another anti-convulsant was tried with no effect, before she was given ‘loading doses’ of Phenobarbitone. This is one of her regular medications but it was felt she should be given a booster. At one point the consultant paediatrician was bleeped to come in and there was also talk of Abby being given some sort of surgical anaesthetic to act as an anti-convulsant. Nurses have also begun to offer IV fluids once again since Abby’s feeds are stopped during seizure episodes. It’s possible that Abigail will be moved back to the Paediatric Intensive Care Unit today for closer monitoring.

Today there is also a chance that Abigail will undergo a chest x-ray as well as receive the results of a blood test from yesterday. These are both to try and ascertain whether Abby has some sort of infection, possibly in her chest. An infection would be bad news for Abigail as she might well develop pneumonia because of her immobility. We also spoke to a registrar last night about setting the wheels in motion for Abigail to be transferred back to the QE where medical staff can more properly care for her epilepsy. Clearly, until she is stable this won’t be possible.

Secretions, IV lines and seizures

2004-03-02T22:56:00.000Z

It’s a week since I last updated you and eight days since Abigail had surgery to correct her reflux and fit a gastrostomy feeding tube. In the days after her operation last week, her fitting certainly subsided and it was generally felt that Abby’s threshold for triggering seizures had been temporarily lowered by the trauma of surgery. She was moved back down to the surgical ward on Wednesday last week.

The days after the operation did see a new symptom develop. Abby occasionally experienced gagging and vomited up what I can only describe as ‘froth’. Initially it was thought this might be a seizure episode but it was later reckoned that this frothing effect was not due to a fit but something to do with the operation on her stomach. Abby’s surgeon felt that although he wasn’t sure of the specific reasons, the symptom would subside as time went on. Generally though, Abigail looked really good: her facial skin has cleared up tremendously and she’s been alert and responsive.

Thursday was not a good day, though. Doctors decided that Abby was not absorbing as much fluid as she needed through her gastrostomy and that she was in danger of dehydrating. To this end, Abby was taken back down to theatre and given her second general anaesthetic in a week so that doctors could put a more substantial intravenous line in. This would pump fluids directly into Abby’s bloodstream. It took two hours to fit a line and in the end doctors opted for the last resort of a long line into her neck which required a stitch to keep it in. Evidently, Abigail is so small that doctors had considerable trouble finding a vein thick enough to accept an IV line. The next morning Nix counted over thirty attempts to get a line in all over Abby’s body. They had even tried to put one into her head!

It was also Thursday that nurses began to offer Abby some milk feeds via continuous pump into her gastrostomy. These feeds were in addition to IV fluids. Gradually her milk feeds have been increased such that she is now on 30ml/hr – the same level she was on before surgery. At the weekend, Abby’s milk feeds had reached a level such that she didn’t require additional IV fluids and she was put onto continuous milk-only feeds. Despite this, her main IV line remained in place after all the difficulty doctors had in getting it in – they wanted to be sure that Abby was happy on milk before taking it out! Again, Abby has seemed very alert and well in herself throughout the last week or so and despite the trauma she’s been through.

This morning, though, there was bad news. Abigail had quite a severe epileptic fit that lasted around fifteen minutes. It was the first fit since the two days after her operation and like those episodes, she had the quick-release anti-convulsant drug Lorazapam administered. Abby was also given oxygen and doctors were bleeped to her bedside to assess the situation. There seems to be no apparent reason why she should have such a large fit again. As a result of the drugs, Abby slept very deeply for much of the rest of today.

This evening, Nix went in again to visit. Doctors were once again called to Abby as she seemed to be experiencing difficulty in breathing. This is not something she’s had a problem with before. All other vital observations appeared normal, but tonight Abigail is on oxygen and under close observation. She also vomited up some more froth this evening. One theory is that she may have accidentally inhaled a small amount of mucus which may go on to develop into a chest infection. Tomorrow, Abby is likely to have a chest x-ray.

Despite her large seizure this morning, surgical consultants are quite keen to discharge Abigail home! We are clearly not happy with her progress at the moment – she is fitting again, seems to have some sort of respiratory problem and it’s yet to be proved that she can adequately put on weight and feed correctly. Our health visitor has already begun to put the wheels in motion for her to be readmitted to the Queen Elizabeth Hospital in Woolwich (where she had been) for the remainder of her recuperation.

Unsettled post-surgery

2004-02-24T14:15:00.000Z

Abigail had quite an unsettled night after her operation yesterday. She fitted quite a lot overnight and continued to have problems getting back up to a normal temperature. This morning she’d calmed down quite a bit and her body temperature was beginning to show signs of recovering. Abby was in a very deep sleep when we saw her today – this is almost certainly due to two doses of Lorazapam which were needed overnight to control her fitting. Doctors are not overly concerned about either her temperature or her fitting. They take the view that, with all her problems, Abigail had any number of reasons to have her seizures triggered after the trauma of surgery and they’re expecting the fits to subside again in time.

After having her overnight meds administered through it, Abby finally had her naso-gastric feeding tube removed this morning which feels like a big psychological step forward for us as much as for her. Of course she has the gastrostomy tube instead, but that’s more discreet and Abby can now look forward to a ‘clearer’ face without the tubes and surgical dressings of the last few months. It will also give her skin a chance to recover properly from the soreness brought on from the dressings.

Staff on the Paediatric Intensive Care Unit – where Abby is currently enjoying one-to-one nursing – say that Abby might move back down to the surgical ward to continue her recovery at some stage today, although there is the possibility that she may stay another night up on PICU. Much of that depends on how her body temperature recovers. One nurse told us that each hospital has a different ethos on paediatric care after surgery. She said that some hospitals would put a patient like Abigail straight back on to the ward to recover, but Lewisham felt that Abby needed closer attention given her history.

Abigail has her operation

2004-02-23T22:12:00.000Z

Today’s good news is that Abigail successfully endured a three hour operation this afternoon to correct her reflux problem and to insert a gastrostomy feeding tube into her stomach. This evening she is recovering up on the Paediatric Intensive Care Unit at Lewisham hospital.

After a quick visit to the doctor’s surgery this morning with Josh (croup and a heavy cold), Nix and I went to the hospital for about 10am and spent time with Abigail as she was given her final glucose feeds and medication before surgery. She slept soundly most of the morning but thankfully she did wake up and play with us for a bit before she went down to theatre. Abby had actually been sick twice in the night from reflux and had only slept for four hours so it was little wonder she was tired.

At around 12.45pm we unhooked Abby from her monitors and feeding pump, got her changed into a very small and brightly coloured surgical gown and then carried her down to theatre where we spoke with her anaesthetist. She explained how they would administer her pain control and also warned us that Abby may well experience quite a bit of pain for two days after the operation. We both found it very difficult to say goodbye to Abigail as a nurse carried her into the theatre. She went in at 1pm and although we knew there was some pre-operative procedures to go through first, we’d been told that the operation would last 90 minutes and expected her out at around 3.30pm.

The afternoon seemed to drag and became increasingly more tense and stressful as time went on. At 4pm we asked a nurse to enquire after Abby. She could only tell us that she was still in theatre and that in some very young children the operation can take longer because it’s that much more fiddly. At 5pm we asked them to phone up again and we were finally told that she would be moved up to PICU shortly. Having already been given a tour of the facility earlier in the day we went up to meet her. At this point we still had no idea of the success or otherwise of the operation, or why it seemed to have taken more than twice as long as it should have. A surgical registrar then came to see us to explain that the operation had gone smoothly and that it had taken a longer because Abby is so small and the procedure was quite delicate. In fact, Abby was still down in the recovery room near the operating theatres so we went to meet her. Once there we learned that administering the correct anaesthetic and setting up the epidural and taken some time. Abby’s operation had not actually started until 2.15pm.

We were astonished to see her awake and blinking at us as we met her. She was being given oxygen and was quite cold but otherwise she was recovering well. She had two IV lines in – one in each arm – but generally looked in good shape. She did look a bit scared and a little pale but this was probably a potent mixture of anaesthesia, drugs and shock. Nix and I helped to wheel her up to PICU where she was transferred to her bed. She is expected to remain in intensive care overnight tonight and for some of tomorrow, depending on how she recovers. Nix is staying at the hospital tonight but as I left at around 8.30pm, she was suffering from quite a low temperature and attempts were being made to warm her up with heaters. This is probably just her reaction to the drugs and anaesthetic. Doctors have said they will abandon a round of two of her anti-convulsant drugs tonight: both Piracetam and Topiramate cannot be given intravenously and doctors want to give Abby’s stomach time to recover from her operation.

We will speak at length with Abigail’s surgeon on Wednesday but in the short term we’re expecting her to be moved back down to the ward sometime tomorrow and for feeds through her new gastrostomy tube to begin after about three days. In theory, there is a 7-10 day recovery period after which she’ll be allowed home but given her other problems, doctors may opt to keep her in for a longer period to confirm that she is able to feed properly and gain weight again.

Pre-op update

2004-02-23T09:37:00.000Z

Just a very quick update to say that Abby has been quite settled over the weekend and enjoyed lots of visitors! She’s still on her full 30ml/hr continuous feed and although her reflux seems to be making her uncomfortable at times, she has not been sick at all. We spoke with Abigail’s surgeon on Saturday and Nix spoke with a registrar last night who again talked through the details of the procedures. Nix and I are going into the hospital shortly to spend most of the day there – Abby’s operation is still scheduled for 1.30pm and should take around 90 minutes. Nix will be staying at the hospital with Abigail tonight, but as soon as we know anything after the operation and I am back home I will update you all.

Abby is five months old

2004-02-21T16:06:00.000Z

Our little Abigail was five months old on Monday and what a five months it’s been! Here’s the latest on Abby from the last few days.

We’ve continued to experience frustration with some of the care and bedside manner of staff at Lewisham hospital, but things have improved somewhat over the last week or so since we’ve gently put our foot down over several matters. One positive is that there is an excellent play specialist on Abby’s ward who has been visiting her and stimulating her with various lights, fibre-optic devices, music therapy and touch.

This week doctors ordered that Abigail’s continuous feeds be increased from 20ml to 30ml per hour. This large increase caused us quite a bit of concern which we asked nurses to document in her notes. The Queen Elizabeth hospital had abandoned continuous pump feeding at 23ml per hour as milk was beginning to pool in Abby’s throat and choke her. Thankfully, the very small amount of weight she has put on since January seems to have negated this as she does just seem to be coping on 30ml per hour now. Nurses are weighing Abby every day and today she has maintained her weight from yesterday at the heaviest she’s ever been! Having said that, she is still technically underweight and a good four or five pounds short of what she should be. Doctors are simply trying to fatten her up for surgery on Monday.

Another minor frustration this week was the news that Lewisham have simply run out of Topiramate – Abigail’s main anti-convulsive drug. They claim that there is only one supplier in the UK and that a new order would take two weeks to arrive, by which time Abby will be home. This is a rather different story from what we were told in our local village chemist, who said that they could order the drug for us but that it might take “three or four days to arrive”. We’re not quite sure what the real story is, but in the meantime the Lewisham pharmacy are having to crush tablets for Abigail so that they can be fed down her NG tube.

Today, Nix and I spoke with Abigail’s surgeon ahead of her operation. She will undergo a Nissens Fundoplication (to correct her reflux) and a gastrostomy (to insert a feeding tube directly into the stomach) on Monday 23rd at 1.30pm. The procedure will take approximately ninety minutes. There is the possibility that Abby will need to spend a night in the Paediatric Intensive Care Unit on Monday after which she will continue to have her drugs administered, but all other fluids will be by IV line. After three days she will begin feeding again. Recovery time is expected to be around a week and we’re hoping that once Abby is stable she can be moved back to the QE hospital, although whether this happens remains to be seen. Other minor points:

In the end, Lewisham didn’t repeat any of the tests that the QE had done as they said they would.
Abigail’s fits still seem under good control. She’s had no visible fits for several weeks now, although in the last few days she has become noticeably more restless and uncomfortable. We think this is because she is up to the limit on her feed intake and that her reflux is troubling her.
In her spare time, Abby enjoys watching her mobile and fibre-optic lights, listening to classical music, and being cuddled and hearing the voices of those she knows!

Poor care at Lewisham

2004-02-15T16:44:00.000Z

It’s been a frustrating and confusing time since Wednesday when Abigail was transferred to Lewisham hospital for surgery to correct her gastric reflux problem. We have felt quite disillusioned and disappointed as the superb care and attention to detail of the Queen Elizabeth hospital seems to have been replaced by misunderstanding and poor care at Lewisham.

Prior to transfer, the QE told us they expected Abby to be moved specifically for surgery at Lewisham since all other avenues of controlling her reflux had been explored. They even mentioned this Monday 16th as a possible date for surgery. But once Abby had been moved, Nix spoke to an associate specialist who seemed to give the impression that surgery was not at all inevitable and that some of the tests already done at the QE would have to be repeated. Abby would also be put through some alternative feeding regimes despite the fact that these had already been tried and had failed at the QE. Later, Nix spoke to Abby’s consultant who seemed more positive but said that surgery would be more likely the following week (23rd onwards). Already there seemed some confusion or miscommunication between us and/or the hospitals about Abigail’s care plan.

Nix visited Abby again at 10.30am last Thursday where she found her curtains closed, she had not been bathed or had her skin creams applied and she was wearing the same clothes that Nix had dressed her in 24 hours previously. The following day Nix visited again at 10.30am and Abby was again not dressed for the day and her daily bath and skin cream regime had also not been done. When questioned about this, nurses said that they had presumed that Nix “did all that”. Clearly no one knew of our social and home life circumstances that mean that we are not always able to be there to do these jobs. Thankfully, the nursing staff were very apologetic and helpful once the situation had been explained.

Abigail was put straight onto a continuous feeding regime via pump. Nix expressed her concerns about this as it was the first thing that the QE tried when Abby was admitted with feeding problems in late December. It was abandoned a short time later as milk was pooling in Abigail’s throat causing her to choke. Again, Lewisham seemed intent on maintaining this plan and still do. Nix asked to speak with a consultant and was told to be at the hospital for 9am on Saturday for the morning ward round.

Nix and I both went in yesterday for 9 o’clock and were told that the ward round didn’t actually begin until 10am. When they eventually got to us, the doctors took Abby’s notes and discussed her case outside the room without seeing Abby or us and then moved on. All this despite a verbal request from a nurse that “the parents would like to speak to you” and a written comment to that effect in her notes. We were not at all pleased. When the doctors were bleeped at our request to return to the ward and speak with us they were unable to. We’ve also had some problems with dressings that Abby is allergic to being used on her face despite written and verbal requests not to use it. Hopefully we’ve now resolved that situation.

All in all we feel that much of the care at the QE has been disregarded in favour of Lewisham’s own agenda without any consultation with us or regard for our opinion or situation.

Today (Sunday) I spent the whole morning with Abigail who was very settled and sleepy. Some good news is that her anti-convulsant medication really seems to be working well now – she doesn’t appear to have fitted at all recently. I finally managed to speak to an on-call consultant this morning who cleared up a few of the queries and concerns we’ve had. She said that it’s not that they don’t trust the opinion or care from other hospitals but that they must be absolutely sure of the reasons for surgery before operating. Although we were told that at least one of the tests for reflux would be repeated, it hasn’t been done yet and doctors seem to be concentrating on her feeding regime at the moment. The consultant admitted that current attempts to work through options other than surgery seem to be failing and that surgery was now almost certainly going to happen soon. She said she expected a date to be set for some time within the next two weeks.

Although all our worries about Abby’s care have yet to be answered, we are now a little more confident that she will get the surgery she appears to require very soon. We are just hoping that once it’s completed and she’s stable, Abby can be moved back to the QE hospital to recuperate where the staff know her and where we can visit her much more easily. We are hoping to catch Abby’s consultant surgeon on his round tomorrow for more details.

Transferred to Lewisham for surgery

2004-02-12T09:53:00.000Z

Abigail was transferred yesterday from the Queen Elizabeth hospital in Woolwich to Lewisham hospital in preparation for surgery to correct her reflux and feeding problems. Although it’s highly likely that Abby will return to the QE in the future – even if it’s just for recuperation from the surgery – it was difficult to say goodbye to the nursing staff yesterday. They have been absolutely fantastic in their care for Abby and have often told us of how they all ‘fight’ to look after her at the beginning of shifts!

Nix spent most of yesterday afternoon at Lewisham settling Abby in. Initially she was on an open ward but a consultant later said that we’d spent enough time in hospitals in the last five months and so she was moved to a large private room. Nix had a confusing conversation with a registrar who seemed to imply that the surgery was not definite, citing other ‘medication options’. This was a bit discouraging given that many other options have been tried and none have worked.

Once Nix spoke to the consultant in charge of Abby he seemed more encouraging, saying that he thought surgery would be required. Unfortunately, Lewisham hospital have decided they want to repeat some of the tests to check for reflux that have already been performed at the QE. This means that Abby will not now undergo surgery until a week on Monday (23rd). This is quite frustrating as most of the necessary tests to check for severe reflux have already been performed and they all pointed decisively to the need for surgery. Also, it means another week spent at a different hospital that’s more difficult for us to get to.

Recommendations for surgery

2004-02-08T23:25:00.000Z

Overall, Abigail’s long-term prognosis remains the same but recently her fitting does seem to have subsided significantly after a reassessment of her medication. She continues to be cared for in hospital.

Back on 13th January, Nix and Abby attended a clinic run by the regional paediatric epilepsy specialist from Guy’s hospital. Generally the consultant seemed quite positive and proactive and made some significant changes to Abigail’s medication in an effort to get her fitting under more control. Many of the drug alterations have to be made over a period of time and these are still continuing now. One change is that Abby will not now be offered Diazepam as ‘quick-release’ anti-convulsant for her more prolonged fits simply because it seemed to be having little or no effect. Thankfully, she seems not to have needed it anyway for the last two weeks or so.

There has still been the problem that nurses are unable to increase the volume of Abigail’s feeds for fear of her vomiting them up. Instead they are having to give smaller concentrated feeds with added calories more often. Despite this, in the last month or so Abby has either fractionally gained or fractionally lost weight each week. So on 26th January, Nix travelled with Abby up to Guy’s in London to go to a feeding clinic. This was a useful meeting attended by a neurologist, a speech and language therapist and a dietician. They examined Abby and concentrated particularly on what has become quite a marked oral sensitivity around her mouth caused by being fed by tube rather than orally. The results were some practical advice on feeding suggestions and simple exercises to help desensitise her mouth. The neurologist also commented on the possibility that much of what is currently interpreted as ‘fitting’ may well be simply evidence of discomfort due to reflux. He said it’s possible that much of Abby’s apparent stiffness and ‘abnormal movements’ may just be a reaction to her severe reflux problem. In light of this and other evidence, the specialists at the feeding clinic were very happy to add their support for a recommendation to operate on Abigail at the earliest opportunity to correct the reflux and put a stop to her vomiting.

Although referral for surgery was initially slow to get going, things seem more definite this week. Abby will be transferred to Lewisham hospital this Wednesday 11th for some more tests before hopefully undergoing two surgical procedures sometime the following week (16th onwards). The main operation will be a Nissens Fundoplication which essentially corrects the weak valve at the top of her stomach which currently allows food back up into the oesophagus. This procedure, although not complex, does rely quite heavily on the skill of the surgeon – if he tightens the passageway too much Abigail will be unable to burp or vomit at all. Too loose, and her reflux will not be fully cured.

The secondary procedure will be a gastrostomy which will insert a more permanent feeding tube directly into the stomach through the abdomen wall. This will mean that Abby will not have a naso-gastric tube down her nose which will be more comfortable and more discreet. Long term, it’s hoped that these two procedures will enable her reflux to be corrected and for her to feed more normally and to begin to thrive and gain weight. If and when Abby moves back to oral feeding again the gastrostomy tube can be removed. Abigail is expected to remain at Lewisham hospital for 7-10 days recuperating. We don’t know whether she’ll then be moved back to the QE, but it’s expected that if the operation proves a success and Abby begins to feed properly she’ll then come home once again.

Lastly, let’s give you some other minor news in brief!

As mentioned, Abby’s weight has fluctuated up and down a little but has essentially remained the same since she was admitted on 29th December. This week she’s lost a tiny amount again and currently weighs 11lb 2oz – Joshua and Rebekah weighed around 15 or 16lb at the same age.
You may remember that her skin had been quite bad recently – she has suffered from fungal infections and reactions to many of the dressings and tapes used on her face to keep her feeding tube in place. It’s good to report that this seems to have cleared up completely in the last two weeks. A nursing regime of creams and daily baths has meant that her skin now looks as beautiful as it should! Also, a dermatologist who examined Abigail suggested a trial milk-free diet for a month which is still in effect, but her skin complaints may well have been due to other reasons.
Although Abigail does still fit from time to time, she has seemed a lot more settled this week with few instances of sickness. Abby has been very relaxed when being held and has even made a fuss when put back in her cot or when being changed – these all seem like small steps forward. At the moment, nurses are trying to sit Abby up in a baby chair during the day to aid her digestion and to offer a better view!

Abby still in hospital

2004-01-30T08:12:00.000Z

Apologies that we haven’t written an update on our daughter Abigail since 9th January – things have been very busy for all of us at work and home. Abby is still in hospital and has recently seen a number of specialist consultants. There continues to be some difficulty in feeding without her vomiting and it looks as though Abby may well be recommended for surgery to correct her reflux and to insert a semi-permanent feeding tube directly into her stomach.

Reflux problem diagnosed

2004-01-09T12:22:00.000Z

Abby is still in hospital and the latest news on her is mixed. She has only been sick a handful of times since the new year, but this is because she is now on a two-hourly feeding regime which would be very difficult for us to maintain and cope with at home. Despite being on a high-energy milk she has continued to lose weight since Christmas, although the latest weigh-in yesterday brought the better news that she has finally begun to regain weight again. Abby continues to have regular appointments with a dietician whilst in hospital to monitor her weight and feeding.

Nix and I spoke at length with Abigail’s paediatric consultant on Tuesday evening. The results of a 24 hour pH test on Monday showed that Abigail does indeed have an extensive gastro-reflux problem. This means that the valve at the top of the stomach doesn’t close properly and she is susceptible to heartburn and vomiting. These results were not a surprise given her symptoms and condition. Doctors will now consult with surgeons at another hospital to see if they are prepared to operate on Abigail to perform a procedure which would largely correct her reflux. It’s also likely they’d perform a simpler operation at the same time to insert a feeding tube directly into the stomach. This tube would not necessarily be permanent but would allow Abby to be fed more easily (not down the nose) whilst we try to retrain her to feed orally. Given her weight, it may be that surgeons feel they could not perform these operations just yet and there may be a long waiting list anyway.

Abigail's’ fitting does seem to have worsened since being in hospital too. She has regularly had a drug administered to calm her larger convulsions down. Abby’s consultant feels that the nature of her fits may well change over time (something that is fully expected) and that her medication may have to be adjusted as this happens. As if she didn’t have enough problems, Abigail has recently had very bad skin on her face, with soreness and weeping. In addition to being allergic to one of the dressings used to keep her feeding tube in place, she also seems to have eczema and another skin virus. A dermatologist has seen Abby and she is now on three different skin creams as well as all her other medication.

When we spoke to the consultant on Tuesday, we asked lots of difficult questions regarding Abby’s life expectancy and prognosis given her current condition. We were told that things are indeed very bleak and that Abigail has generally not responded well to treatment. In particular, the fitting is still not completely under control and doctors fear that it may never be so. Given the fact that Abby has not really progressed at all since birth in a developmental sense, doctors also fear that she may not ever reach many of her ‘milestones’ and that she may not move forward much developmentally. Abby’s consultant agreed with us that she does seem to be deteriorating in many ways, although in terms of her weight she has put some back on in the last few days.

It was reiterated again to us that it’s almost impossible to put any sort of prediction on her life-expectancy. She may well live to her twenties, or she might not live to next Christmas. The doctors say that children with Abby’s symptoms are often surprisingly resilient and can ‘turn the corner’ very quickly. On the other hand there is the difficulty over her almost non-stop feeding regime and how we would cope with that at home. Nurses have tried several times to revise her feeding to three-hourly, but the vomiting returns. We also wait to see what the surgeons say about correcting her reflux problem.

All in all, the revised prognosis this week has served only to confirm our thinking on how Abby is doing. Although we don't particularly expect to lose her in the very short term, we are continuing to make every opportunity count with her and to stimulate and relate to Abigail as best we can whilst she is in hospital.

Abby underweight and re-admitted to hospital

2003-12-30T18:08:00.000Z

Apologies that we didn’t manage to update you on Abigail’s condition before Christmas. Things were pretty hectic as you can imagine.

Our Christmas wasn’t too bad. Abby has seemed more settled in the last week or so and we enjoyed a good family time with the three children although this was slightly marred by some more bad news just before Christmas. We received the results of the eye test performed at King’s which showed that Abby is almost certainly cortically blind. This means that despite the eyes and optic nerves being perfectly operational, there are some problems with the way the brain interprets the visual information. Practically, this means that Abby may only see areas of light and dark or colour, and may also only see intermittently or very close up. Both we and the doctors are of the view that Abigail is definitely able to see from time to time as she often appears to ‘lock on’ to an object or face momentarily, only to blink or look away soon afterwards – this is a classic sign of cortical blindness and is a direct result of her brain injury. Although very disappointing, we had fully expected this result given her development. On the more positive side, research has found that babies with this form of blindness can have their sight greatly improved over time with the correct stimulation and visual encouragement.

The problem of Abby’s feeding has continued – she regularly vomits up feeds and occasionally blood as well. Recently, the homecare nurses switched Abigail onto pump feeding. This was an effort to feed her milk by naso-gastric tube via a timed pump which would allow her feeds to be given over a longer period of time. This has meant that we are a little more free during feeding than we were, but it’s made no appreciable difference to her vomiting. Since Christmas Abby has lost yet more weight and is now medically underweight.

Abigail’s medication was also changed shortly before Christmas. The Phenytoin anti-convulsant drug (thought to be a possible reason for her vomiting) is being phased out over several weeks whilst another drug is brought in over the same period. Unfortunately, with Abby continuing to lose weight and the Phenytoin not due to be withdrawn completely until the middle of February, doctors yesterday took the decision to re-admit Abigail to hospital again in an effort to find out once and for all the cause of the vomiting. After going in yesterday afternoon, they tried Abigail on a continuous slow feed, but Abby continued to vomit despite this. A pH test will be done next week (possibly at another hospital) to determine whether there is a mechanical reflux problem. If there is, it’s likely that Abby will be fast-tracked for surgery to correct that and to fit a more permanent feeding tube directly into the stomach. Doctors still believe that the Phenytoin medication is the most likely cause of the vomiting (it’s the primary side-effect) but with Abby’s weight dwindling, they simply cannot wait until February to see if her vomiting subsides once the drug is fully withdrawn. Surgery will be a difficult decision for the doctors because they’ll be reluctant to operate on an underweight baby, but will be caught in a vicious circle of trying to correct the reason for her lack of weight gain.

Although the re-admission of Abby for a second time is yet another setback, we are much more accepting of it this time. We are hoping that the medical staff can correct the reflux problem and hospital is clearly the best place for that. This next week or so also provides us with a period of respite care – we are both physically exhausted from the feeding and 24-hour care that Abby requires. Of course (as you may recall from previous updates), having Abby in hospital brings it’s own pressures and tiredness.

Not parenting, but nursing care

2003-12-17T23:11:00.000Z

Life at home caring for Abby has remained difficult these two weeks since our last update. There’s been no improvement in Abigail’s condition at all and we are feeling very low and inadequate in our ability to cope with the current situation or any that may face us in the future. Last week Rebekah finished nursery and will move up to primary school in January which leaves a five week gap for Nix at home with three children all day. This, coupled with Abby’s condition and the level of care required plus the fact the Becky and Josh seem to be quite a handful at the moment makes for an exhausting home life. Matt's work at ITN, though still incredibly satisfying, seems to pale when compared with the eighteen-hour days Nix is putting in to her ‘work’ at home. And it seems unrelenting.

Abby is continuing to vomit many of her feeds up and has lost weight again. She’s now back down to 10lb from 10lb 9oz three weeks ago. Although her medication is staggered so that it’s administered between milk feeds, it remains difficult to know how much of these drugs she is actually getting. She has recently been put on to three anti-sickness drugs (bringing her total drug count up to seven) but these seem to have little effect so far. Just yesterday, Nix spoke on the phone to Abby’s consultant who instructed us to double the dose of one of her anti-sickness medicines.

There is also the distinct possibility that Abby’s Phenytoin medication may be stopped altogether. This is the drug that is proving very difficult to get up to the right levels in her body and could well be the cause of much of the sickness. We don’t yet know if this will definitely happen, or whether it will be replaced by another anti-convulsant drug.

The results of Abigail’s recent VEP eye test at King’s are still to come through but her second EEG scan results have. They seem to indicate that many of the smaller abnormal movements and limb-stiffening that had been assumed to be minor seizures do not in fact appear to be so. This is good news in that Abby may well be fitting somewhat less than we’d previously though, but bad news in that it raises concerns about what the abnormal movements might now be. They could be very early signs of one form of cerebral palsy. What is worrying is that Abigail often gets distressed during these periods – she simply doesn’t like what’s happening to her, so it’s not as though she is unaware of her problems.

One of our prime concerns at the moment is that we are not really parenting Abigail at all – we are merely providing a necessary level of 24 hour nursing care, and this obviously has implications for the other two children. Having said that, they both seem to be coping OK with Abby at the moment. It’s just the day-to-day challenge of home life with two very energetic toddlers and one very dependent and very sick baby.

Care at home not easy

2003-12-02T23:47:00.000Z

Since Abigail was discharged on Thursday, caring for her and coping with ‘normal’ family life has been quite difficult. Abby has had to return to hospital every day since she came home except today. On Friday she went to King’s in London for an EEG scan. Although the full results are not available yet, Nix felt that it may have been difficult for any effective conclusions to be drawn because Abby was so wriggly. Doctors will try to compare the brain scan results with those of her previous EEG some weeks ago.

On Saturday Abby had to return to hospital because her naso-gastric tube had come adrift and had to be re-inserted. On Sunday she went back once again because the sticky dressing attaching the NG tube to her cheek had come off completely. The skin on her cheek had become very sore and was weeping quite a bit. Nurses therefore re-inserted the tube once more into the other nostril and attached her tube to the other cheek. Yesterday Abby had a routine weekly visit to hospital yet again to check the levels of anti-convulsant drugs in her blood and doctors will use these regular tests to determine whether her dosage is correct.

Today Abby has not had to go to hospital for anything! She is sleeping quite well at night and her overt fitting does seem manageable now, but the main problem we’re dealing with is her feeding. Towards the end of her recent stay in hospital, Abigail had begun to vomit occasionally and although this wasn’t a specific concern with regard to her feeds (she is putting on weight quite well) is was obviously a concern given that her medication is administered orally.

Since coming home, Abby has been vomiting (or refluxing) her feeds up regularly. In the last two days she has been sick after almost every feed. As well as being tiring, messy and time-consuming, it’s also quite demoralising. Doctors are undecided on the possible cause of the sickness but are not overly worried at the moment. It could be drug side-effects, a reaction to mild fitting, an inability to cope with her feeds, or most likely a consequence of having a naso-gastric tube. This gives the need to get Abby back onto bottle feeding more urgency, especially as her tube feeds often take over an hour to give!

In the short term, the hospital speech and language therapist is liaising with us at the moment – they get involved at a very early stage to assist with oral problems including feeding issues. Abby will return to King’s on Friday for her vision test after which it should be possible to tell whether the link from her optic nerve to her brain is functioning correctly. Our next outpatient appointment with Abby’s consultant is not for another two weeks or so but we may have to liaise before then if Abigail’s vomiting continues as it currently is.

With regards our home life, we’re finding things quite difficult at the moment. It is difficult not to devote a large proportion of our time to Abby, and Rebekah (4) and Joshua (2) are both proving quite a handful for Nix during the day. It may simply be their age, but Nix is also limited in going out and maintaining their routines and finds that she is constantly on the go the whole day.

Home once again

2003-11-27T13:30:00.000Z

Just a very quick update to say that Abigail has been discharged and arrived home at lunchtime today along with a vast range of milks and medicines. She remains on a naso-gastric tube for feeding and we have been taught how to use this properly – we will also be attempting to reintroduce oral feeds in the coming days and weeks. Doctors feel that Abby has improved markedly in terms of her severe fitting and that she is now well enough to be cared for at home. The other brief news is that a conclusive eye test will be performed in the next few days at King’s in London, and also that Abby’s anti-convulsant drug levels have been increased once more. Today is a good day although it’s clearly the start of a long road ahead. I’ll send a fuller update soon.

More settled but worry over vomiting

2003-11-20T23:30:00.000Z

Last week Abigail’s condition seemed to be quite changeable and it was difficult to pinpoint any trend in her condition. As you may recall from my previous update of the 14th, Abigail had some major epileptic episodes last Friday and she had another bad day last Saturday too. She had to have more Lorazapam injections, which offer a strong and immediate anti-convulsive treatment as well as her regular Phenitoin and Phenobarbitone drugs. Her oxygen saturations were also dropping occasionally and Abby did have to have oxygen gently administered to bring her sats back up.

Since last Saturday evening, though, Abby seems to have been much more settled. Since then and during this week she has only had minor twitching and episodes that appear to have resolved themselves in a matter of seconds rather than minutes. Doctors have decided not to administer oxygen in the event of these minor fits as her saturation levels seem to correct themselves fairly quickly. Abigail has also not had to have the stronger Lorazapam drug offered at all since last Saturday evening.

Nix has been able to cuddle and hold Abby much more this week and she has certainly seemed more settled. There also seems to be some possible signs of better eye movement, with Abigail appearing to ‘lock on’ to faces momentarily – something she has not done up to this point. We are still unsure of what (if anything) she can see.

Despite a good few days, there remain some short term concerns. Abigail is still vomiting her feeds up from time to time. Although she is putting on weight well at the moment, this is obviously a concern given that her drugs are now given orally. Also, Abby’s drug levels are being monitored in liaison with an epilepsy specialist from Guy’s hospital in London. She is currently recommending an arbitrary drug level of 22 in Abby’s blood. Despite several increases in her dosage, blood tests this week have revealed a level of just 1. This is both good and bad news. On the good side, it means that there is still plenty of scope and ‘headroom’ in her drug levels should the fits remain difficult to control. On the bad side, it means that Abby is likely to spend some more time in hospital whilst these levels are corrected and monitored closely. Anti-convulsant drugs ‘metabolise’ in the body very rapidly so large amounts have to be given initially and then smaller doses are needed to keep the level up.

As far as the medical staff are concerned, none of this changes Abigail’s long term prognosis which remains very bleak. But for us, this week has been a better week and we’re hoping that it continues into a real trend of improvement in the treatment of her fitting. Once that is under more control we may be able to begin oral feeding again and have the prospect of bringing her home once more. Abby is likely to remain in hospital for another few weeks yet.

Medication changes have no real effect

2003-11-14T23:14:00.000Z

Apologies that it’s over a week since our last update on Abigail’s condition – life has been very hectic and much of our time has been taken up with visiting Abby in hospital. Last week was particularly difficult with Abigail’s fitting seeming to worsen and drugs having little effect, and that really continued into last weekend too. On Saturday we saw another of the consultants who said he'd decided to review Abby’s main drug level on the Monday with a view to increasing the dose if blood tests showed that her tolerance could be extended. Unfortunately, the level and severity of her fitting in the meantime meant the decision was taken a day earlier on Sunday (9th) and the drugs were increased significantly.

In a change from our expectations and assumptions of last week, the consultant also commented he felt that there was no immediate danger on Abby’s life in the short term. He even went as far as to say that she had almost “about as much chance of dying in the next few weeks and months as you or I.” This news has been difficult to digest because it has been made quite clear to us that Abby will in all probability have a very low quality of life. In addition to severe cerebral palsy, she is expected to have severe mental and physical handicaps affecting speech, movement and intellect. We are still concerned about her sight and the consultant on Saturday said he expected her to be unable to walk, talk or feed herself. In short, she will almost certainly be completely dependent on us.

It is horrific to think of your own child in these terms, but it’s incredibly difficult to imagine life for Abby under these circumstances for any great length of time and we had begun to wonder whether she might be spared a long life like that. As doctors have already said though, it is notoriously difficult to predict these conditions in young babies and so we feel that we must press on and expect the bleak prognosis that has been given. Some better news this week was that Abby was weighed on Monday and is now 9lb 12oz – nearly three pounds up from her birthweight and looking much bigger with it!

At the beginning of this week, Abby’s consultant held some more discussions with a specialist neuro and epilepsy consultant at Guy’s hospital in London. She made some suggestions as to medication levels and combinations of drugs that could be tried. These were put into effect and this week has seen what appears to be some improvement in the control of Abigail’s fitting. In the last few days she has seemed much more relaxed and has been having less major episodes. To this end, Nix and I have been able to hold her much more and have bathed her a few times without much epileptic reaction – something that we couldn’t have done last week.

As I write this, Nix has just returned from the hospital tonight (Friday 14th) and has said that Abby has actually had some more major episodes again today and that her oxygen saturations have dropped from time to time too. She has even had to have oxygen administered by mask occasionally.

As you can gather, events seem to change constantly and it’s difficult to see any trends in Abby’s condition over more than a few days. Her consultant did chat to us both yesterday and confirmed again that it may not now be possible to ever fully control all the fits, but that they were still confident they could be brought under much more control that is currently the case. There also seems to be quite a range of drugs still available to try should the current cocktail not prove as effective as hoped. Doctors have said they expect Abigail to remain in hospital for another week (possibly two) whilst her medication levels are honed and adjusted.

Outlook bleak with more fitting

2003-11-06T22:49:00.000Z

I’m afraid that once again the latest news about Abigail is not good. A week after Abby was re-admitted to hospital following a routine consultant appointment, the prognosis for her is if anything more bleak than before. Over last weekend Abby seemed to be fitting more and more and despite the fact that she was back on a general anti-convulsant drug, she also had to have several courses of an immediate anti-convulsant administered by injection during some episodes. The vast majority of Abigail’s feeds are now by naso-gastric tube again, although the occasional one has been managed orally.

On Tuesday Abby was taken up to King’s College Hospital in London once again for an EEG brain scan that would determine that specific area of the brain that was fitting and therefore be a guide to what medication might more readily bring the episodes under control. We got the results of that EEG today (Thursday) and Abigail’s consultant has also liaised with an neurological consultant from Guy’s Hospital in London about possible courses of action concerning her medication levels.

Nix and I have been very low this last week as we’ve watched Abby helpless and in a lot of distress through her frequent fitting episodes. The better news is that doctors feel although Abby’s fitting is more of a challenge than first envisaged, they do think they'll eventually get her medication right so that her episodes are much more under control. The bad news is that with Abby now over seven weeks old and showing few signs of making much ‘normal’ developmental progress, the outlook for her seems to be getting bleaker.

The EEG results showed that in addition to her outward fits, she is experiencing many sub-clinical fits which do not manifest themselves externally at all. The upshot of this is that Abigail is fitting pretty much all the time. Although her fits are not causing more brain damage, they are now seriously impeding her child development and doctors feel that not only might she be heavily delayed in reaching her ‘milestones’, she may well never reach some of them at all. Her sight is a particular worry and we do fear that she is not seeing properly at the moment, if at all.

Finally, we did ask Abigail’s consultant about the prognosis on her life as a result of all this. She said that although doctors are not overly concerned for her at this stage, the outlook for Abby is not very good and notoriously difficult to predict with any certainty. She said that she had seen children with similar problems to Abigail who had not made it to their first birthday and others who were in their twenties, but that it was certain that she would not live to ‘normal’ old age. This is more attributable to her fitting (probable epilepsy) than to cerebral palsy or any specific mental deficiency.

As you can imagine this has been incredibly difficult news to digest and we really do feel very low indeed. We feel torturously torn between wanting our daughter to live and experience life and all that it (and we) can offer her, and the awful thought of not wanting her to suffer as she so clearly is at the moment. We are hoping that the doctors can alleviate at least some of the burden of these energy-sapping fits very soon. We’re also having to face telling our other two children, Rebekah (4) and Joshua (2) much more about the seriousness of Abigail’s condition than we previously wanted to.

More seizures in hospital

2003-11-01T22:03:00.000Z

As you will know, Abigail was re-admitted to Queen Elizabeth Hospital in Woolwich on Thursday after a routine consultant clinic appointment brought fears that Abby was fitting again. Since then, she has been in a high-dependency room on the children's ward and is back on an oxygen saturation and heart rate monitor. She was also put straight on to a course of anti-convulsant medication – you may remember that her drugs had originally been stopped a week or so before her discharge. This time she was put on a different drug to try and stabilise the fitting she is experiencing. Doctors also planned to carry out another EEG brain scan at King’s College Hospital.

Since Thursday the news has not been good. Abby is definitely fitting quite regularly and her saturation levels have been dropping such that she has had to be given oxygen at least once. The new drug that doctors have put Abigail on doesn’t seem to be controlling the fitting and there is the possibility that she will have to be prescribed a different drug again in order to control it. One fit last night was severe enough to warrant an immediate dose of a stronger one-off anti-convulsant. Since the medication has made Abby so sleepy again, her feeding has not been going well and she is back on a naso-gastric tube for her milk. This is a big setback after Nix had struggled for so long to get Abby onto normal bottles and teats.

Doctors still don't have a date for an EEG scan but will chase King’s for a date on Monday. When Abigail was admitted on Thursday her consultant originally said she expected her to be in until this coming Monday (3rd) but that’s looking very unlikely now. The shock off having Abigail back in hospital and the pressure that brings with visiting and managing home life is now far worse than it ever was before we brought her home. Rebekah and Joshua are asking where Abby is and have become very clingy again.

To be honest, Nix and I are not coping at all well with this major setback. For the first month or so of Abby’s life we were told to take each day one at a time. Right now we just have to take each hour one at a time in terms of our ability to see beyond the horizon.

Back in hospital due to fitting

2003-10-30T15:29:00.000Z

It’s nearly three weeks since my last update on the condition of our newborn baby daughter Abigail. Quite a bit has happened since then and I’d like to write a fuller update of events for you in the next day or two. In the meantime, I wanted to let you know about what's happened today. We were due for our first paediatric clinic appointment at 11am today with Abigail’s consultant for a check-up and progress review. The consultant gave Abby a thorough check-over and although physiologically she seemed to be doing well, concern was expressed at Abigail’s recent habit of turning her head quite violently to the right, stiffening her limbs and becoming very fractious. Abigail’s eyes also seemed to indicate again that all was not well.

We had been pleased that in the last week or so Abby had begun to cry properly for the first time, but in the last three days she has been quite miserable at times and nights have been very difficult. We had thought that she’d developed colic as she’d become very difficult to settle or feed overnight. Adding all these things together with her examination led the consultant to suspect that Abigail has been experiencing some sort of fitting again. The upshot is that Abby has been re-admitted to Queen Elizabeth Hospital today and is expected to remain there until at least Monday whilst doctors perform another EEG brain scan and put Abby on to a course of another anti-convulsive drug by IV line.

Obviously this is a big set-back for us having only had Abigail home for a few weeks. We’d also been pleased that she had seemed to respond well to being taken off her original medication completely before being discharged. The plus side is that at least an EEG is likely to be done relatively quickly – the consultant did say that she could order an outpatient test but that it may take 10 weeks to come through. With Abby being admitted it’s more likely to take a matter of days. Her current ‘fitting’ will not cause further brain damage but could impede her development and so doctors are keen to find out more as quickly as possible.

Abigail comes home

2003-10-12T00:12:00.000Z

It’s been over a week since our last update when we received the dreadful news about Abigail’s prognosis. As a family we have very much been in grief and shock for Abby and her future, although ironically she has otherwise continued to flourish and grow despite her problems. Contrary to doctors’ initial expectations, she’s now completely off all medication and her feeding also improves daily. She is gaining weight well and is now around 7lb 11oz, up from her birth weight of 6lb 14oz.

At the beginning of this week Abby’s feeding tube was removed and she's been feeding very well from a bottle and her sucking reflex is certainly there now. Today’s brilliant news was that Nix, the children and I today collected Abby from hospital where she was discharged from Special Care. She has spent this afternoon and evening with us as a family and it’s a great feeling to have her home at last after nearly a month in hospital. This evening Nix gave Abigail her first proper bath and Rebekah and Joshua have been absolutely lovely with her and dote on her all the time.

SCBU nurses have suggested that Abigail should now be taken off her strict four-hourly feed pattern and switched to feeding on demand which could be interesting as she still doesn’t really make much noise and has yet to cry properly. Tomorrow or Monday we are hoping to take her for her first walk in the country.

The next few days, weeks and months could well be the easiest as far as her caring needs are concerned, but we have been promised all the necessary support, back-up and resources necessary by the hospital, paediatricians and the community healthcare professionals. It still remains to be seen the actual extent to which her brain damage will affect her, although we have been told that doctors fully expect her to be very severely affected in many ways. Nix and I are resolute though, that we are by definition able to provide her with the best possible care, and Becky and Josh will certainly be a large part of that as they stimulate and relate to their new baby sister. We have decided that for the moment we will not be telling the children anything specific about Abby’s condition, especially since we are in no position to give any definite certainties about what may happen. We are also very aware of ‘labelling’ Abigail, even for her own brother and sister – we’d rather they know her simply as Abby and not have any preconceived ideas.

We are both convinced that our best course of action for these first few months is to treat and care for Abby as a ‘normal’ baby and deal with any issues as they arise. To that end we will be seeking to offer her, Joshua and Rebekah as rich and as wholesome an experience of life as we are able.

Very bad news from the MRI scan

2003-10-02T19:47:00.000Z

I’m sorry to have tell you that the results of Abigail’s MRI scan today were not good. The scan showed permanent damage to both sides of Abby’s brain as well as the part that deals with movement. The consultant in charge said that although the MRI now shows clear and irreversible damage to Abigail’s brain and that her long term prognosis is therefore not good, the extent to which that might manifest itself in her life was still unknown. Despite this, doctors say they fully expect Abby to have problems with her limbs and movement and that she may well have a severe mental handicap. Ironically, Abby’s feeding continues to improve and today she took a whole feed from a bottle. It seems that getting her feeding going well is now the only hurdle to overcome before she comes home.

This evening we've just returned from the hospital where we spoke to one of the consultant paediatricians. He was able to outline in a bit more detail the likely long term effects of the brain damage that Abby has suffered. None of it is good news. At this stage – and particularly with a very young baby – it is notoriously difficult to predict what might happen. That said, the consultant said he felt it very likely that Abigail will develop cerebral palsy and that she will suffer quite serious and severe physical and mental handicaps with that. He said that many functions including speech, development, intellect and communications could be very harshly affected. There might well be a period of relative ‘normality’ for a few months before any of these disabilities become readily apparent, but he felt convinced that it was highly probable they would.

Obviously, Nix and I are completely devastated by today’s news which really hasn’t sunk in yet to it’s full extent. But we have already pledged to each other that we will endeavour to provide the best possible care for Abigail as a whole family including Rebekah and Joshua. I must tell those of you that see us regularly that we’re as yet undecided about what to tell the children. Many of you may also know that we have recently been trying to move house. Needless to say that idea has been shelved for the time being.