William started the day with his endoscopy and liver biopsy. They didn't see any varices which is good as it strongly suggests that his liver is not too damages and should recover if he could come off TPN. We do still need to wait for the liver biopsy. His liver enzymes are high in his blood and so there must be some degree of liver damage. The biopsy result will tell us if it is mild, moderate or severe. If severe, William will need a liver transplant.
Unfortunately, William was not too well for the rest of the day. His blood cultures yesterday showed that he still has the bug in his line and I think the procedure and infection combined took its toll a bit. He was hot, grumpy and floppy all day so we spent most of the time cuddling and snoozing together, watching incessant Thomas the Tank Engine. Not at all like William (apart from Thomas). William is now on 3 IV antibiotics. If he spikes temperatures any higher or if he becomes more unwell the line will have to come out. However, the team here have echoed Chelsea and Westminster in saying that they can't promise to keep William infection free anymore, that his gut seems to be leaking its contents into his blood and that a new line could become just as infected very quickly (as we have seen many times before). Surely this is reason enough for him to need the small bowel transplant. He can't keep on going like this indefinately!
In my information session today I learned about exactly what will happen to the donor and to us on the day we get that call if listed. I also learned that 'intestines' are not listed on the donor card or register and that intestinal transplantation does not currently have widespread awareness, even among medical staff. On average, there are 25 children donating organs each year. The current list for transplants involving intestines (including combined with liver) is less than half that. Intestines are being left behind when other organs are retrieved. If all 25 donors gave their organs, all children on the list for isolated bowel should receive an organ within a matter of a few months. In reality, children are dying on the list because of lack of awareness. If we are listed, I hope we can use our story to help alleviate this situation.
1 comment:
I must admit before I started reading your blog I had no idea that a bowel transplant was possible, though we've often joked about me having one as my guts are so sluggish and rubbish a lot of the time, due to a bad combination of CF digestion and scarring left from gastroskesis (where you are born with the abdominal organs outside the body)
The ongoing issues of organs is so hard, I just wish the system worked better, it seems mad that it is possible but that the supply means lots of people end up dying needlessly.
I have been thinking a lot recently about my own potential transplant and what you said about it being something you talk about for years untill you begin to think of it as just another viable treatment option really struck a chord with me as I realised this is how I think of it.
The truth is despite knowing people that have had them, and following the blogs of others, I honestly have no idea what is involved nor how hard the assessment process is both physically and mentally.
You are both doing so well, and being so strong to get through all of this.
xox
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