Wills is still kind of stable but took a teeny step back today from 20 mls to 10 mls per hour diorylte. His gut stopped working again during the night with only the tinyist of dribble coming through his stoma. At lunch time, he was wretching violently. He can't be sick as he has had a Nissen's Fundoplication - an operation to stop stuff refluxing up from his stomach. I use a syringe on his gastrostomy when it is clear he is trying to be sick and got 180 mls back. This was where all the diorylte had gone where it had mixed with all the medicine that he had been given during the day and a bit of bile. No wonder he was feeling sick. The feed was turned down and Wills was much more comfortable. It is horrible to see him with tummy pains and feeling sick as his bowel has its ups and downs. There is no way around this but it is yukky and unpleasant for him.
Just in the last hour or so a little gas and stuff has passed through the stoma. You easily get pleased with small things on this transplant recovery road. At least his gut is getting there, all be it very slowly. I know there are a few more snakes and ladders to come yet. We are having to take William's feeding very very slowly at the moment and, for the mean time, he is on full TPN which will be increased today to give him some more calories. This is not the direction we are hoping to go in but everyone is confident we will turn around again...I would finish this sentence with 'soon' but I am not going to say it - let's just leave it that we will get there eventually! I have been looking for a perfect song to put some photos to for a Christmas video card. I am beginning to think it will have to be 'Patience'!
William asked me today who gave him his new tummy. I said the surgeon to which he replied 'No, Mr S put it in for me. I said who gave it to me!' I wasn't expecting that so soon. He is a clever little thing and has been lying there quietly listening to all kinds of conversations. For now, I will wait until he asks again, seek advice and start thinking about the best response for him at his age.
9 comments:
Sorry Wills has had a bad day. Big hug for you Wiils. You are a very brave boy! Lots of love to you Sarah.
Love Mum and dad xxxx
PS bought a pair of jeans today--size 12 !!!!
Hugs for you and William hunny. Hope he has a better day tomorrow.
When I explained about William's transplant to Seren, I said that a little boy or girl who didn't need their tummy anymore because they'd gone to be with Jesus, had given their tummy to William as a present, because his was broken.
Hugs,
Becky xxx
That is lovely Becky xxx
Gosh Sarah that is a very grown up question for William to be asking, it's amazing just how much they take in.
Still praying for William and all of you and hoping he has a better day tomorrow.
Lots of love, always
xxx
I think it is a matter of tailoring what you say based on what you think is appropriate for his age and your beliefs. I don't think there is a right answer. It shows what a bright boy he is that it occured to him to ask, lets pray that there will be days when you tear your hair out at his 'being a clever little boy'.
Sorry he's had a bad day. Wow - impressed with him asking who gave him the tummy. I am sure you will find the right words.
take care,
SherryB
p.s. lovely to see you on Fetch today
A clever little lad!
Still hoping and praying - that things carry on upwards, the faster, the better.
Richard.
So funny you mention that song...
it came out around the time I was in Harefield and would appear on the radio pretty much every day whilst my mum was driving up to see me. She said it became synonimous with me and what was going on and she began to see it as a good sign whenever she heard it.
The very word patience describes exactly what we all have to be when going through transplant.
General progress still sounds really good lovely xxx
Hi Sarah,
Have been meaning to post here for a long time ... been following all the latest and even if I have not posted be assured you have been in our thoughts and prayers especially these last few weeks ... keep looking for these ladders .. you will land on them .. soon I hope.
Flo (mrs le Greg) and her boys
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