We’re very much in limbo at the moment. On one hand, we have an amazing little boy, who’s getting bigger by the day, smiling and giggling, but hanging over us is the concern of Oliver’s liver and the reality that he may need a liver and small bowel transplant and we are currently a week into a transplant assessment, and we’ll get the outcome of that assessment at the end of this week. The last week has been the toughest in a long time.
It’d be easy to think that you get a new liver and that’s the problem fixed. Sadly, it’s not that straight forward. There’s an unknown wait for a donor to become available and the family to kindly donate the organs and we’d then be faced with a very long operation and recovery. Rejection and infection are the two biggest risks of transplant as the body tries to reject anything it sees as foreign, so immunosupressants are needed to supress the immune system, which therefore makes the body more susceptible to infection. Oliver’s entire life would be altered by a transplant, but equally he may not manage without it.
We have spent the last week having counselling by the Transplant Nurse at Birmingham Children’s which has been really useful and we have a load more appointments lined up this week with the transplant team including the anaesthetist and surgeon who would be involved. There’s so much detail and it seems like transplant is a done deal at times, but once we have the outcome and make a decision, it’s all systems go so we need to be prepared and informed.
It’s hard to think that before Oliver was born I was a wimp when it came to anything medical. The sight of sick would make me turn green and blood would have me hiding behind my hands. I’ve lost count of how many times I’ve seen Oliver have his blood taken, and I held his arm tight the other day so that one of the registrars could get a cannula into his wrist!
Oliver has been back to theatre twice since our last update as well as he had another confirmed line infection. Due to his liver, the doctors didn’t want to take any chances and his line was removed and a few days later, a new line was put in. Oliver, as always, was a little superstar and for the first time I was able to go to theatre with him and stay with him whilst he was anaesthised. Within 90 minutes Oliver was on his way back to the ward and smiling away, before admitting defeat and having a mammoth sleep! The new line meant Oliver could have his cannula’s removed and after going 4 days without PN, this could also restart.
That’s about it for now. In the meantime we’ll be crossing our fingers and toes that Oliver’s liver makes a remarkable recovery.