Saturday, February 07, 2009
OK, lots of prayers and positive thoughts please. William is really well in himself but it is a crunch time. Since we took fat out of his feed his stoma output has been fine. We have now but it back in, but long chain fat rather than the medium chain fats in his previous feed. If he tolerates it, we can change to a 'ready to hang feed (nutrini) on Monday and we will be home by Wednesday, as long as his stoma output and blood sugars stay stable. If his stoma output gets too high (over a litre) we will have to take fat out again and go back to the drawing board. The solution to that scenario may be fat free feed with his fats delivered intravenously - i.e. parenteral nutrition one or two nights a week. This would still be hugely better than 20-24 hours parenteral nutrition a day but it would be such a shame if we had to go back to it at all. His new bowel should be able to absorb all his nutrients and it was until he got the pneumonia. His output is up since the fat has gone in and the next couple of days will be critical in seeing if he can cope with it or not. It really is a cross roads and I so, so hope we go down the easy street. It is about time! If we are forced down the harder one we could be here for weeks more and we all need to be at home together now. So, loads of prayers and positive vibes please....
Thanks so much for the lovely post William has had. It has so cheered him up. I have addresses for most people who kindly sent him things to keep him busy and William is eve more busy now making thank-you cards. I must thank Ann and Steve for the lovely CDs as I don't seem to have your address. The CD a collection of old classic children's songs. Many of them bring back memories of singing them with my Grandparents and William is having a really good laugh to tracks such as 'Jake the Peg' and 'Right Said Fred'.
We did manage to escape on Thursday to play in the snow and make a snowman whom William named Cyril. This picture was taken by Paul. William hasn't been eating snow - it is the foamy saliva that he seems to like to hold in his mouth and refuse to swallow - nice! I do have lots more pictures but they are all trapped on my mobile phone (I can't work out how to send them to my computer by bluetooth). I didn't bring my camera as we thought this hospital stay was going to be a few days, not another month! Let's hope that things work out so as it will only be a few days more.