Phil is about to go down for his 6th operation in 10 months. It has certainly been a tortuous and complicated journey for him since diagnosis. He will have a new permcath (dialysis catheter) inserted into his chest, and will quite literally restart dialysis when he comes round from the anaesthetic. He has been remarkably philosophical about it all, asking which side of his chest it would be put in.
It’s obviously not the operation we were hoping for this week! However the transplant cancellation – and the fact that he had his previous catheter removed last Friday – at least meant he had a hospital- and tube-free day yesterday. We went to Bournemouth – where his brother Chris has been living – and all had a game of football on the beach. Phil was able to play in the sand, and later had a luxurious bath – two simple pleasures he has been denied for months. He was a very happy boy indeed.
With no new date for a transplant, we brought Chris back to London with us. He was very happy to be reunited with us all.
This afternoon we will be meeting with the consultants to try to figure out what went wrong, and what caused it. Anne’s research shows that any of the Hep B vaccine, the TAC immunosuppressant and the vancomycin antibiotic can provoke increased levels of liver enzymes. The fact that he had a cocktail of all three on top of one another suggests that this is a possible cause of the ‘abnormalities’ that were detected prompting the last-minute postponement of his transplant.
If this is indeed the case, then it is reversible and we may even be able to get a new transplant date as early as next month.
In the meantime, the doctors are also (finally!) going to have a thorough look at Phil’s immune system – something I had asked them to a while ago seeing as there are rare and serious immune deficiencies in my family and the fact that Phil has had atypical reactions to practically every single drug and intervention he has had. As the lead GOSH consultant – the UK’s leading paediatric nephrologist – commented to me the other evening: “He really is rewriting all the textbooks”.
It’s a pity it has taken Monday’s late-night drama to finally spur this, but at least now it will be looked into properly.
I’m going to take Chris off to Nature Club today so I can be there for Phil when he wakes up. I also have to check with our GP if his new course of antidepressants is ready for collection. With stress like this, it’s a wonder we’re not all taking a course..!
Hallo, hey great news that your new consultant is getting things done regarding reserching Phils immunity system, with the family history should of been done sooner, never the less its a blessing
now and once found it will be all system’s go, and now i too can’t wait either. How is your day with Chris who i bet is loving being with you his dad? Take good care and love to you all from Pat X