I am writing this blog from a lovely room in The Thistle Hotel in Birmingham. The Children's Hospital has a contract here to provide parent rooms. It is certainly a lot cosier than hospital parent accomodation. At the moment, I plan to spend the evenings here and sleep on the ward with William. He begged me not to 'leave me all on my own'. However, we visited my room together before he went to bed and he found the biscuits. I am allowed to come here in the evenings if I sleep with William afterwards and bring him a biscuit back to smell in the morning. I reckon I could get away with it if I got up at 6 and got back before he wakes. It would be sods law that would be the one day he woke in the night though!
We are settling in and William is charming everyone. We had a few sessions postponed today, so tomorrow is going to be crazy! We did have a chat about practical issues with the social worker. She felt that William's quality of life and life in general for us all will be a lot better post transplant than it is now. William had a preliminary 'get to know you' session with the play specialists before getting to work on preparation for potential transplant tomorrow. They are making him a special book all about Thomas breaking down and needing a new engine. Tests today were a chest x-ray, wrist x-ray for bone age and ultra sound of his neck veins. This confirmed what we already know. The radiologist was being careful not to say that she was struggling to find veins but I put her out of her misery and told her we already know and that is a key reason why we are here for transplant assessment. He has one good vein on the left and that is it. We have been warned that we may have to come up here for future lines if he is listed. They will do an MRI scan to establishe where they can put lines for a transplant and will write a plan. They will want to take over responsibility of his veins to prevent another surgeon placing one and destroying a vein they have chosen for his transplant access. We also had a neurological review. William was tired and fed up then so not on his best form but the neurologist could see that he is bright. He has clear physically disabilities and she agreed that he has the look of a genetic syndrome. She is going to talk to colleagues but doesn't feel that it is degenerative. She thinks it is either mild cerebral palsy associated with his prematurity or a 'neuro-genetic' condition. This should be enough to satisfy that his neurology should not prevent him from having a transplant and she did say she felt his physical limitations would improve post transplant. We discussed his current possible diagnosis of tricho-hepato-enteric syndrome (THE). Most children have not survived long with this and, with the improvements in home TPN etc, William is doing better. If he has it, it is severe in his gut but mild in his liver. A syndrome is a collection of symptoms and not all children with the same condition are the same. It could be that there is a motor component of the syndrome that previous children have not exibited because they did not survive infancy or because that component was not so pronounced for them. The neurologist felt, as do most doctors, that William does have some kind of very rare syndrome, possibly THE. For the transplant, a definative diagnosis doesn't really matter as his new bowel won't have the genetic condtion - just like new lungs in CF.
It has been lovely to see people from the 'transplant kids' forum. James and his family are lovely (who I referred to a few weeks ago when introducing his fantastic story). They were in for stoma reversal and went home today. I will miss them. I am now getting to know another family from the site who are having a more bumpy post transplant ride. The Mum (whose name I don't actually know so will ask tomorrow) gave me a pile of vests their son had outgrown. I only packed 3 for William to sleep in as we have a washing machine at Chelsea and Westminster. There is one token operated machine for the whole hospital here and all William's are damp and yellow from leaky nights. Tomorrow evening, the hotel room will become a laundry.
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