Abigail home - but we're not sure why

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

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

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

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

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

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

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

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!