Friday, May 26, 2006
Another clinic this morning. The first question was about how William is in himself now. Luckily, he is pretty good today or I get the feeling we would have been admitted. We have to bring him in if there is any more blood so he can have an emergency colonoscopy and endoscopy. Following the disastrous result of having oral antibiotics he is now not to have any more oral meds, apart from the Urso and Vitamin K as they are such tiny quantities. We do doubt they are actually being absorbed though. He has to go to Kings for a liver work-up on Tuesday so we may address what to do about them there. They will also look at his fatty liver and the fact his liver enzymes are up a bit at the moment. W discussed his chestiness and recurrent nasty chest infections and pneumonia today. We have to get him reviewed again at the Brompton but, if it continues, he will have another endoscopy to see if he is pooling saliva and stuff in the upper GI tract, ready to aspirate and choke on. It may also be that his Nissens is coming undone and may need repeating. Poor thing, so many operations and procedures. So, all in all, we are muddling along but not quite as well as we were. Hopefully this is just because he has been unwell and it will all pick up again. It is a shame the antibiotic had such a huge impact as it looks more and more like William just can't be fed, at least not for the foreseeable future. Unless there are any emergencies over the next 4 weeks, all this will be re-assessed then as his consultant is on holiday. When he gets back, we will have to see if William needs the endoscopy and if he needs yet more fluid in his TPN to make up for the huge losses he is having in his stools and gastrostomy drainage at the moment.