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.