There’s a song by Half Man Half Biscuit – they were nearly big once upon a time – The Light At The End Of The Tunnel (Is The Light Of An Oncoming Train). The words of the song don’t really describe what’s going on at the moment but I think the sentiment rings true. Every time we think we’re getting back on track, the light at the end of the tunnel doesn’t turn out to be quite as welcoming as we’d hoped.
Jude was back in hospital last Wednesday after spending a day arching his back and crying continuously. He wasn’t eating properly and it turns out he did have a chest infection. There was talk about him having fits, I wasn’t accepting that, I still don’t accept it and I am pretty sure I’m right. He’s been taken off the sedative drug chloral hydrate and this has been replaced with Diazepam and he’s also been on some antiobitics for the chest infection. So, the current list of drugs is….
Prednisolone, Vigabatrin (on a slowly reducing dose), Diazepam, Ranitidine, Gaviscon and if really required chloral hydrate. The diazepam seems to have had a beneficial effect, Jude is much calmer now and the consultant has strongly suggested that his repeated arching and screaming may be a little bit of attention seeking – Jude has always been comforted and it makes sense that if he is in discomfort he is going to use his skills to his advantage. This makes a lot of sense to me.
Whatever has been going on, the outcome is clear – Jude has taken many steps backwards in his development in pursuit of medical progress. While his EEG may have improved, it has come at a cost and we feel that in many ways we are starting again, but always wary of that oncoming train!
Jude was awake for nearly 12 hours straight today – he had a few short naps along the way but it is much different from a few days ago when he would only be awake for a short period of time, anything longer tended to be accompanied by loads of distress for baby and parents. Not only was Jude awake for all this time, he was also relatively calm with only brief moments of crying. (There’s that light at the end of the tunnel we need to be wary of).
Jude’s eye contact is improving, his feeding is improving and he’s taken a liking to lying on his stomach – a tip I got from one of the posters on the Infantile Spasms e-mail group and because this is one of the things you must not do to your baby we had never really thought about it, the rules don’t always apply in these circumstances. Another suggestion from the e-mail group, which is aimed at improving eye contact, was to stick pictures of us on Jude’s cot so he gets use to looking at our faces. I have no idea if it will work but couldn’t see a downside until someone mentioned the possibility of it causing nightmares! Ha, ha.
And so we’re all back home again, a family once again.
Here’s Jude in a pose that pretty much sums up how he was feeling last week….