Day 44 Update

Its been a while since we posted a proper treatment update for people so here goes.

Rhys is not on medication as much of the day as he was a couple of weeks ago (at some point I’ll post a complete list of all the drugs that he has had to take). He’s managing to get through most of the night with just TPN and the feed that goes in his nasal tube. The nurses are still coming in at around 2am to do observations and at 6am to take bloods, other than that though its pretty quiet at night which gives the opportunity to get a reasonable amount of sleep.

His diarrhoea is still there but at least its not affecting his sleep like it was.

He’s had plenty of visitors. Nanny, Gran and Aunty Anne come in to see him and Tracey on a regular basis. Alex has been up to see them too.

The teacher, music therapist and play specialist have been in as well.

He’s almost finished making a hot air balloon out of papier mache. Once he has the balloon and basket connected together then we’ll see if we can get it to fly without setting fire to the hospital or getting the fire brigade called out.

His blood counts are looking good at the moment. Haemoglobin has been above 9 for the last 8 days, white blood count has been above 5 for the last week and above 6 for the last 4 days, platelets dipped to 57 yesterday but were above 60 for the 6 days before that. Finally his neutrophils have been above 3 for the last 8 days. Basically things are looking good from that point of view.

Michelle, his consultant, came and saw him the about a week ago and said that hopefully he’d be able to get out of isolation soon. By soon that means another week from today and he might be in non-isolation or if he’s really lucky at Sam’s.

Tray hasn’t managed to get away this weekend as Jackie isn’t well. This has given us a chance to actually go out and have a meal together. The first time in what must be 6 weeks.

Speaking about food Rhys has taken the first steps towards eating a bacon sandwich. He’s managed to eat a quarter of a slice of bread with a scraping of butter and Marmite on it. I know, its an acquired taste but it is edible, especially if your diet consists of liquids going directly into your veins or down your throat via your nose. Besides after all this time not eating his taste buds have probably packed their bags and gone on holiday somewhere sunny, unlike the dismal wet weather this weekend. Mind you being in hospital when the weather is like this does have its advantages. He’s also managed to eat some Rich Tea biscuits.

Anyway, that’s all for now. Check out the latest photos which we’ve uploaded and we’ll do an update again later in the week.