Today started badly and then got a bit worse. Mum got to the hospital to be told that I had managed my feeds by bottle overnight - so far so good. And that my nasogastric tube had been removed - excellent, if I don't need it. But that I had been going 'a bit dusky and having some desats' during those feeds and my oxygen needed turning up to 200ml/hour - far from good when I was already tired and meant to be resting.
It went properly wrong when Mum tried to feed me watched by the Speech and Language therapist. I couldn't manage a bottle feed without going blue, dropping my saturations and my heart rate despite all the tricks. The therapist tried me lying on my side and feeding me with a slow flow teet but I still couldn't cope. She was somewhat irritated that my NG tube had been taken out before she had assessed me and said that swallow wasn't safe and that I needed a new tube and shouldn't have anything by mouth until I'd been investigated. I don't like having tubes pushed through my nose and my nostrils hurt.
|Another tube, different nostril|
So M+D had their first 'room of gloom' meeting at St. Thomas'. Apparently their 'quiet room' isn't too gloomy - it has windows, but the conversations can still be a bit disheartening.
Apparently the conversation went a bit like this:
Dad - "We have four areas we want to cover
1. We are not unhappy with Arthur's care and remain very grateful for all the hard work done. All decisions have been sensible with the information available at the time.
2. We're now in our thirteenth week commuting to hospital. We've run out of enthusiasm, and out of energy. And we're getting a bit frustrated by Arthur's lack of progression and delayed discharge.
3. We want to know what the plan is for the next few weeks - what combination of home or hospital, tests or watching, treatment or rest.
4. Can you improve the coordination and communication. NG tubes coming out and going in again. Tube feeds/bottle feeds. Wide teats/narrow teats. Etc. We trust your judgment but sometimes have difficulty knowing what that judgment is."
Enough to make me feel slightly sorry for my consultants!
It seems I'm a bit slow on the feeding thing and need to be taught. This may just be because I'm a boy (no really - sexism, on a neonatal unit, I ask you!) or it may be more serious. The plan is nil by mouth for two days to rest me properly and then another formal swallow assessment.
If I still have problems then I may get to meet Mum's friends from radiology and special throat doctors with frightening sounding camera thingies.
And I need to get my strength back. All this is likely to take around 2 more weeks in hospital although I may come home sooner (or later) than this.
On a positive note, I now weight over 7lb (3.26kg), have had an extra eye check which was normal and can still poo at inopportune moments when Mum is trying to change me.
|Growing out of my clothes fast!|
Love to all,