After his monthly blood results the gastro team have decided to increase the volume of the fluids he receives, as his urea/kidney function had deteriorated slightly, so they were hoping extra fluids may help this. They are also continuing to reduce his calorie intake as he is still putting on weight at a faster rate than he is growing in length.... so he is turning into a ... mmmm.... the medical term I think is 'porker'. His extra weight could be due to the feeds he is receiving directly into his jejunum. It's potentially a good sign that his body is adapting and taking in nutrition from these feeds, but until it's definite he has this capacity he is still getting his full nutritional needs via TPN. Neocate is a pre-digested milk, so his body doesn't need to process it but just absorb it. As this looks like he is coping with it they are now going to switch him over to a different milk formula, that is only partly digested, to see if his body can cope with breaking it down first and potentially develop his gut more. As his liver numbers are doing well, they will also reduce the time he receives nutrition from 19 hours to 18 hours from tonight. So this means he will be free from his tubes from 12 noon to 6pm, when he is much more portable as he only requires O2. It also means that he will get hungrier so will hopefully be more inclined to want to take oral milk bottles. This afternoon he guzzled 20 mls and had no adverse effects.
Sam was a bit grumpy and definitely wheezing and coughing when I spoke to Francis tonight, so Francis has already booked his bed here tomorrow night so he can get a good night sleep and I'll be back at hospital. The girls weren't sure why Daddy had to have 2 nights in a row at hospital. When I explained that it was either me or Daddy that would be with them tomorrow morning helping put on their face paints/make up and costumes for the school fancy dress day....they quickly realised that there was wisdom in our planning!
We're praying for Sami tonight that his lungs can fight off this infection and he can sleep and get stronger.
Best wishes, Shirl