Abby improving

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

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

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

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

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

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

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

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!