The last few days have been quite overwhelming. Woody is progressing really well. He’s particularly strong in his legs now and his arms and hands are slowly getting more coordination. He’s also trying to verbalise more. It’s all really slow progress and because it’s slow, it’s easy to miss how far he has already come. The doctors are really pleased with how he’s doing. They can’t make any guarantees about his recovery, of course, but so far so good.

What we have been told is that if Woody continues to respond so well to the therapies in the hospital, it means he’s more likely to be an inpatient for longer. It seems back-to-front but to give him the best chance of a full recovery, they would want to keep him close to the full suite of support, which makes sense. I’m desperate to get him home but not as much as I’m desperate for him to fully recover.

Woody’s repeat MRI shows some recovery in his brain which is what we would have expected. Although I think his physical progress is the better indicator anyway.

The neurologist told me today that music can be really good for rebuilding the brain so we are trying to play Woody lots of music. Over the last couple of days, volunteer musicians have been on the ward and Woody has really enjoyed listening to the music. They even played him “You got a friend in me” from Toy Story before they even knew his name!

We got a chair for Woody that can go outside so we’ve been on a few adventures in the hospital grounds. He’s definitely enjoying this, especially seeing the cars and buses go by. He got to see his little sister for the first time in a month today although he didn’t really seem to react much. I think maybe we expected him to be more excited and responsive than he was. That was quite sad but I know their relationship will rebuild. I have no fears at all about that.

And in terms of understanding what has happened to Woody over the last few weeks, the doctors are back to thinking that the portosystemic shunt has played a major role. Seemingly, paraflu along with steroids for croup and possible constipation and dehydration could have produced a lot of proteins in the body which then produce a lot of ammonia in the blood. It’s looking likely that Woody’s ammonia level rocketed during his first few days in hospital and that’s what made his brain very unwell. By the time they even considered that he may have this shunt and should get his ammonia levels checked, they had probably already come down quite a bit.

It’s all very complicated and technical but it does make a lot of sense to me. Both in terms of why he suddenly deteriorated after a bout of croup but also why he often gets so unwell and potentially even explaining his developmental delay.

I’m not sure we’ll ever know 100% that this is what happened but it does seem very likely. I’m constantly going over all the information and trying to figure out what could have caused what and what it all could mean. This resulted in another colour coded mind map to try to make sense of it all.

Really I just want to get Woody to a stage of good recovery and find out what plan there is for a possible repair for this shunt. I believe it’s been causing Woody problems for his whole life and I just want him to have an easier and safer life. He really deserves that.

We had another serious incident on the ward last night which I’m not going into here. We were very upset and angry and honestly, we just didn’t need any more stress. We don’t expect perfection but some standards have not been met. What I will say is that the hospital management are taking our concerns over some of Woody’s care very seriously.

So it’s been a bumpy few days. It’s a constant rollercoaster and we’re just having to ride the highs and the lows. Most of Woody’s recovery depends on nothing but time. So we have to sit tight, be there for him and let time do its thing.