The Psychological Side to Transplant Recovery

Yesterday's blog centred on some of the technical aspects of transplantation. Jac, I'm sure you 'learned' stuff because I got some of it wrong but it is my understanding of some of the issues we have faced, rather than medical fact that you will find on here at the moment. I think I may well research some of this in more detail though as it is so fascinating. The only technical thing to report today is that William's liver enzymes are steadily coming down. This is a huge relief and, if the trend continues, he will not need a biopsy next week. This would be fantastic, given the trauma that any hint of an idea he gets that a 'special sleep' may be on the cards creates.

It is the psychological issues of transplant recovery that I have been thinking of a lot today. Wills has been through an enormous ordeal. We adults understand that this transplant was carried out because William needed it to remain alive. William has a mixed understanding. Linguistically, he is way beyond his years and quietly takes in a lot of what adults say around him. However, conceptual understanding is a whole other thing, meaning that he knows things but doesn't understand them. This is a pretty scary half way house to be in. He is constantly looking for reassurance as to what aspects of his current symptoms and treatment will be 'forever' and what is temporary. It is very hard for him to understand that the pain and discomfort he often feels is due to his digestive system getting used to feed and is actually a huge improvement on the flat and inactive gut he had before hand.

One of the intersesting signs that his new gut is functioning well is that he is salivating for England. I am seriously considering a trip to Mothercare for some of those muslin clothes that you never venture anywhere when you have a baby. The consultant on this week shared that he was told in medical school that the best way to judge when a baby is ready to be weaned is when they start to salivate as this is caused by the gut sending messages to the mouth to get ready for food. William used to salivate as a baby and always had trouble swallowing and spitting it. We used to use suction to clear it. As his old bowel became more and more dysfunctional he must have stopped producing as much. Over the last few days, his new bowel has begun to send these messages, indicating it is ready for food. This is a fantastic sign as to the health and function of the bowel but poor Wills has no idea what to do with all this extra fluid in his mouth. He has forgotton how to spit and swallow so just holds it in his mouth. He is confused and frightened by it and finds it difficult to speak. At times, he is becoming somewhat withdrawn as a result. We did briefly try a patch behind his ear to dry up the secretions a bit but we peeled it off sharpish as the consultant with overall responsibility for the small bowel transplant program explained that they haven't been passed as safe for use post transplant. We have to try and stimulate his swallow by touching round his mouth and stroking his throat.

His trauma is not helped by the fact he refuses point blank to open his mouth for nystatin or the gel we are now using in its place. This results in a battle and force from my side every time it is required. It is awful and makes me close to tears as I know that it is putting him off trying anything in his mouth. He was keen to try food but is now more aversive to it than ever before. He will get there but it is going to take a lot of work from the speech and language therapists, psychologists and ourselves. I think the main thing is to normalise food and tasting, make it fun and not make a thing of it. We have been playing with food and painting and sticking with it and playing funny face games. Wills is unable to move his tongue in all the positions needed to eat. There are no more pictures of this because we need to be natural, not pointing a camera in his face when he is engaging with food in any way. We have to encourage licking and dipping - what an excuse for some yummy chocolate foundue's when we get home! I think the important thing will be to sit down as a family and eat and include William at the table. We will actually have the time to do this now I won't be doing TPN every evening.

It is hard and worrying to see Wills so shy, withdrawn and, at times, traumatised but he was similar after his illeostomy this time last year and I know he will get his confidence back in time. He has been through a huge amount, not just with the transplant, but will all the infections and line changes and virtually living in hospital for the last 12 months. Right now he needs lots of love, encouragement, security, praise and, above all, time to process and come to terms with it all in his own way. It is pretty full time and tiring to provide all this for him. I am off for the day tomorrow for a lunch to mark Mum and Dad's Ruby Wedding. It will be lovely to see them and Hope and Ellie and to relax and have a lovely meal - my Christmas dinner as well! I think it will be a break I really need to re-charge my batteries.