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.
9 comments:
So pleased that William got to go out and play in the snow. Will continue to hold you (all) up in prayer and pray that the feeding trouble is over. You deserve to go down easy street for once. May you be filled with the bread of life (and not just the crumbs that fall from the masters table (Matthew 15)but in abundance)
It's great to hear that Wills is feeling well in himself and managed to get out to enjoy the snow :)
I hope all goes well with trying different fats in Wills' feeds, so you can soon get back home to the rest of your family.
Thinking of you often.
Hugs,
Moll x x
fab picture! keeping everything crossed.
Px
Hi Sarah,
Just to say that we popped into the chapel at the hospital again yesterday (Friday) to say a prayer for my Dad and for William. Both Seren and I said prayers for William.
Really really hope that William will be able to tolerate the fats in his feed, and that you can get home very soon.
Love and hugs,
Becky, Seren & Dylan xxx
What a great snowman!
I hope that things can be sorted out with the feeds swiftly-you are in my prayers.
Wishing you a smooth week!
x
A great snowman! Fingers crossed these couple of days go smoothly for you..
HUGSx
Emma xx
What a nice snowman - we hardly had any snow! All my best wishes and thoughts are with you - hoping for easy street! Becky xxx
What a lovely picture.Tinking of you all the time and missing you.You've got to be coming home very soon so we can get together again.Praying hard, love to William and you see you very soon, \sue xxx
Hiya Sarah,
I'll be praying that things go well for William. Sending you a big (((HUG))) too.
xxx
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