Tuesday, December 16, 2008
No encouragement needed to get stuck in as soon as the green light was given
It tastes nice but then what am I supposed to do with it?
Not too keen on 'Quavers'!
William was given the go ahead to take his first tastes. He has been really looking forward to strawberry yogurt and was not dissapointed when a 'Thomas' fromage frais was put in front of him. He needed no encouragement and got stuck straight in, shovelling it in by the spoonful. We soon realised that he wasn't swallowing. When his mouth was full, he sat looking totally bemused. We had to scoop it all out again. The same thing happened when he finally got to bite into one of his advent calender chocolates. It seems William has forgotton how to swallow and is also unable to spit things out. How on earth do you teach someone to do these things? They seem so instinctive. He has ben referred to the speech and language team for an assessment. It will take him some time to re-learn the skills he needs to eat and drink.
Wills is allowed his yogurt, tiny pieces of chocolate and 'melt in the mouth foods', such as prawn crackers, quavers, wotzits etc. We tried quavers for lunch today. Once again, he was keen to get one into his mouth and, as you can see, he was totally unimpressed when it was in! He doesn't like them at all. I was trying to encourage him to have some meringue as I thought it would taste nice and disolve nicely but he was having none of it. There is no pressure. We have bits and bobs in the room that he is allowed to try and he can have them when he feels like it. We found a lovely Thomas sports drinking bottle which he managed to sip from. He didn't swallow it though. Thankfully, I have persuaded him wear bibs, despite his initial reaction that they wer for babies!
We climbed quite a ladder between Sunday's blog entry and today's. William's feed was increased by 5mls every 8 hours and on Monday we reached the fantastic milestone of being on full feed (volume but not ful calorie density) and TPN was switched off!! If I had been able to blog yesterday it would have been the most excited entry since the call. His stoma output increased by nearly a litre yesterday so, today, he is back on half feed. Exactly where we were when I last blogged. We climbed the ladder but then hit the snake that took us back again. I was reassured by the lovely consultant who heads the transplant programme that this is normal. He had tried to push Wills a bit to get him off TPN as his liver was getting cross about being back on. It was a bit quick for him so we went back a bit. His liver has improved since being off TPN so he will stay on half feed and half IV fluid. He may restart TPN, temporarily, if we go square by square for a while and take a few days to be back to full feeds. He started some medicine (good old immodium) to slow his gut down and, so far, it looks to have worked as his output has slowed significantly. This is really encouraging as we tried this and other meds in his old bowel and they made no difference at all. He is going to get there in his own time.