'I think William now meets the criteria for transplant'

We are back in hospital as Wills is still not right following his line infection.

Today, a slightly arrogant (although I often think this when I meet a new doctor for the first time and change my mind when I get used the them) young locum registrar told me William's platelets are up and it doesn't look like his low grade temperature spikes are any concern so we can go home tomorrow. Naturally, I believed him and was very pleased. When I asked his gastro nurse about transport home with the TPN we had with us, he was a tad confused so spoke to William’s consultant. She came in for one of ‘those chats’ and, boy, was it one of those! William can’t go home until Monday at the earliest. Sad though I am, that is sensible. He is not completely right, not too bad, but not right and is now spiking high end of low grade temperatures when we go into his one of the lumens on his line which is a bit ominous. She said we may loose the line but we hope not. She also said that William now meets criteria for small bowel transplant. This has always been something for consideration in the future and, last month, the idea of going for assessment was to see if it was the future the team and we, his parents, thought was best for him. Now, it is felt that this future may have arrived. He has had/has got yet another line infection. He can, and has, become critically ill with such infections and the combination of another failed gut challenge, his increasingly enlarged liver and spleen, uncontrollable ‘massive’ (medical term!) stoma output and the fact that the illeostomy, although making him more comfortable, has not stopped the bugs from his gut translocating into his line, has led to the conclusion the time has come when a transplant can be seen as a life saving procedure and the complications of TPN are an immediate threat to his life. If we loose this line, we will go into his 12th!!! We are running out of venous access. Of course, I was somewhat shell shocked. We will probably be at Birmingham for assessment within weeks, a couple of months at most, and could be on the list at the end of the two week assessment. Of course, they may decide that he is not suitable or that he does not yet need to be on the list but, for the first time, doctors are saying that they think the time has come. They have spoken to the transplant team about him recently so this is not just the Chelsea team thinking this in isolation. A large part of the assessment is for the parents to decide if it is what we want for him so I am trying really hard not to make my mind up before I have all the facts. Paul is certainly more open minded than me (right now, I want it for him because, even though it is a risk, it is a chance!!!). Paul is a bit more stuck on the risk element but I think my little fighter could come through it. Being in and out of hospital so much and with so much uncertainty in life is tough on the whole family and I have to think of the girls as well.

Challenges set and failed

This is another catch-up blog. I really will try harder to keep this up to date. It has been another hectic few weeks with, yet another, stay in hospital. William has been very well since coming home from hospital after his illeosomy and we had all been enjoying time together as a family and doing every day, normal things. Of course, life still revolved around TPN and William's other medical and physical needs but we were home and together.

We needed to try and see if William could cope with the octreotide, the drug that could reduce the huge abount of fluid he loses through his bowel. We also needed to challenge his bowel again to tolerate something going in. Hope and Ellie were staying at their Dad's for a week in the Spring break so I requested that William went to hospital to do all that while they were away so we didn't have to worry about where they would go. So, on the second Monday of the school holidays, William and I went into out Chelsea Pad with strict instructions to the doctors that they could experiment all they liked but we were to be home by Thursday afternoon. We tried a tiny test dose of the octreotide. The first dose gave him a localised skin reaction but the second made him red and mottled all over. So, that option went out ot the window! As we had a couple more days, the doctors decided to challenge his gut with 5 mls per hour of diorylyte. This was swiftly stopped as it increased the output of fluid through his bowel and was making him dehydrated. With this, the doctors realised that we were not going to be able to increase this into a substantial amount of feed to reduce TPN and have him fed, in part, through the gut This feeding pattern would have best helped protect his liver from the TPN but even a tiny bit of something offers some protection for the liver so the next plan was to try 5 mls of neocate (special baby milk with all constitutes in their elemental form, i.e. as if already broken down by the gut) four times a day. This would offer better protection than diorylyte. William's response to this was described by the doctor as 'spectacular!' He lost 3.2 litres from his gut and ended the day we were due to go home dehydrated, unresponsive and with 3 gut bugs living in his line as a result of everything becoming stirred up by the response of the gut to the feed. Far from going home, William instead spent the night keeping the on call doctors busy checking on his responsiveness and prescribing antibiotics and fluids. By the next day, Williams red cell count, neutrophil (a white cell) and platelet counts had dropped and he needed a blood transfusion. We stayed over the weekend and came home to continue IV antibiotics. The girls missed stayed on at their Dad's a few days longer than planned and missed the start of term. So, all in all, a bit of a disaster really!!! We have clinic on May 20th and will discuss where we go next. William's consultant is keen for him to go to Birmingham sooner rather than later for transplant assessment. Although he is not sick enough to go on the list as yet she hopes this will enable us all to see if this is where he is heading and if it is what we want for him. His liver and spleen are now enlarged and, although his liver is still functioning well, his spleen is not doing all it should in fighting infections and producing/regulating blood cells.

We were in the 'Mail on Sunday' 'You' magazine today in an article about 'Wellchild' the charity that organised our garden makeover. I didn't know the article was in today so couldn't tell anyone but it is a good article so check if anyone has it before recycling day.

Referral for transplant assessment

We were at clinic this afternoon. Soon after coming into the hospital, I bumped into one of the play specialists and learned that another of the gastro children died on Easter Sunday He was 18 months old. This child had so many problems it was amazing he lived as long as he did. A real fighter. That is 8 gastro kids that have died since we have been in this world. It is so sad and scary. My thoughts and prayers are with the family. We shared a room with them for several weeks during William's last admission.

I also learned some good news in that one of the other children who was not expected to come off TPN is doing so well that she has weaned right down to IV fluids only and may well be free of lines in the near future.

William had an ultrasound today. The report was not ready in time for clinic and the radiographer was not saying much except that his spleen is enlarged enough to be obviously so by eyeballing the scans. He actually has a bulge from it. All this will be fed back to Birmingham. William's consultant is keen that he goes for his transplant assessment in the near future. He is not sick enough to go on the list yet but it would tell us all if he is suitable and, if so, what the parameters to go live on the list would be for him. It will also tell us if we want to put him through it. The current prognosis is 50% chance of survival. That has actually gone down since Paul and I went to Birmingham for an initial chat about transplant. They have not done many small bowel transplants in children and the stats change according to outcome. The assessment will involve 2 weeks at Birmingham Children's Hospital where Wills will have loads of tests and we will have lots of counselling sessions and discussions so we can make our decision as well. It will be very intense.

Wills is OK but still losing too much fluid through his bowel. So, we are going back to our chelsea pad next week to try a new drug that will be given via a subcutaneous line. He tried this last time but had a reaction to it. However, it was given IV through his central line so we are going to see how it goes subcut. Of course, having had a potentially allergic reaction previously, this has to be done in hospital. If the drug works, we will try to challenge his gut again with a little diarolyte. We will only be in Monday - Thursday so it won't be too bad. The girls are away at their Dad's so it is a perfect time