The Last Week

It has been quite a week and I am feeling totally drained and exhausted. It is now 10pm and William is sleeping soundly and peacefully - that is a fantastic first in recent days and I am hoping to be able to follow him into some restorative dreaming very soon.

Well, my little fighter has done it again - he managed to get to the point where a trip to intensive care was being seriously considered and bounce right back up again. To the huge relief of all of us and all the doctors and nurses here, he is now off oxygen and back to his happy self (most of the time, he is growing more cross with anyone approaching him with a needle or to put painful drugs into his cannula but, after all he has been through, who can blame him!). He now has no central line - a great step forward in general but he still has difficult venous access and it has taken about 12 cannulas to get him better. His poor arms are black and blue, which must be due to the steroids and the drug given to keep his blood nice and thin to avoid clots in the vessels forming between his own 'native' bowel and his 'graft' or donated bowel. We are all heaving a huge sigh of relief but it has left me scarred and nervous when I consider what could have been and how quickly he became so ill, despite all the isolation and protection. It serves to show how vulnerable life post transplant can be and I am looking forward to enjoying life at home with my children so as to make the very best of every minute we have been given back together when William received the gift of his new bowel.

We may have to wait a little bit longer for that to come. I woke early (having been woken up by William's wordless protests at having his IV antibiotics given) on Friday morning to see William's stoma bag full to burst. There was about three times as much as usual for the night so I tested it to see if there was any sugar in the fluid. A little bit, although not ideal, is acceptable at this stage post transplant but more than 2% can indicate rejection as the bowel is no longer absorbing as effectively as it should. A rejecting organ will begin to fail and this is the first sign. The test involves mixing measured drops of the stoma stool fluid with water and dropping in a tablet. This fizzes about and then settles into a colour - blue being negative, bright orange indicating over 2% sugar with a scale of bottle green to orangey browns in between. So far, we had seen blue and the occasional shade of green. That morning, I watched in horror as it turned bright orange! I was conviced William was in rejection. Our shared care protocol sets out clearly what to do so the doctor was paged and a series of phone calls made to consulants here and in Birmingham. I do apologise for them being woken at 5.30am - if Wills hadn't woken me this would not have happened until 8.00! I was so frustrated that no-one was immediately ready with the strong IV steroid needed to hault any possible rejection. Phone calls continued during the day, our gastro SHO was a total star! The message from Birmingham was that they didn't think we needed to assume rejection at this stage and to watch and wait. I was so upset, worried and frustrated at this as I know how quickly damage could be done. I couldn't understand why we weren't acting when William had high stoma output and over 2% sugar - this was exactly what we were told to assume as rejection! I kept thinking why risk William's new bowel. I felt even more worried when we discovered that the level of William's anti-rejection drug in his blood had been way too low for the past few days.

Saturday was a similar day but our lovely consultant was on duty in Birmingham and called the team here himself. The nurses were most impressed with him as it was them he wanted to speak to to ask how they felt William was in himself as this is the key indicator as to why they were not instantly assuming rejction. He called back later to talk to me and, although I am still concerned, he did put my mind at rest as to why they are taking the actions they are doing. On balance, it is not sensible to give William a big dose of steroids to dampen down in immune system even further than it is while he is recovering from such a nasty bout of pneumonia. In this kind of situation, he would be bought to Birmingham for an endoscopy and biopsies from his bowel. This would involve a 'special sleep' and this is also not ideal when his lungs have taken such a battering. Given that he is well in himself and has no fever, it is most likely the sugar and increased output is due to him having been so unwell and, on balance, it is best to watch and wait. He did share my concerns that this could lead to some damage if it is rejection. It is one of those tricky balances of pros and cons. If things don't settle with an increase in the drugs William takes to slow his gut down to enable maximum time for absorption, we will go up to Birmingham in the next few days to further explore what is going on. I did feel much better after my chat on the phone but I am still concerned about rejection, although less so. I will be relieved when the tablet turns blue again.

Sugar is a bit of a theme at the moment as William's blood sugars have been high at times after his bolus feeds during the day. His anti-rejection medicine can cause diabetes so that is a concern. He is now being monitored by the relevant specialists - probably the only team here who haven't yet been involved with him so I reckon he just wanted the chance to say hello! He may need a little bit of insulin but I think the plan is to first tweak his feed regime to fewer, smaller bolus feeds and change the recipie to reduce the amount of sugar in it. It may be that he is also getting rid of unwanted sugar in his stoma stool, after all, he must be absorbing enough to enable his blood sugar levels to increase like that.

So, William is over his nasty chest and we are over a big scare but there are a few things now that need exploring and tweaking. We may be transferred back to Birmingham or may stay here with the local team acting on the transplant team's advice. Either way, we all need a bit more of that patience, especially the girls who were so looking forward to coming home. I miss them so much. I hope we can sort things things out quickly and get home together but I want to make sure he is really well and won't bounce back in this time.

Now, for that rest and early (ish now) night!