I’ve spent most of this week sleeping and being a bit spaced out but thought I’d keep you all updated!
So I had my stem cells last Friday and it seems these have done some good as thankfully my rash hasn’t spread. I also smelt of sweetcorn the following day which Mummy and Daddy thought was a pleasant change from me smelling of sick and stoma poo! I had some more stem cells yesterday and even have a certificate to prove it! As they seem to be working I’m going to have more next week.
I started struggling with my breathing over the weekend and ended up needing oxygen to help me. My rash was also very painful and itchy so I’ve been having intravenous pain relief and most of the time it helps but on Sunday it got too much so I went to see my old friends in PICU for a couple of days where my pain and oxygen needs could be managed better. My skin had started to blister really badly and it took Mummy, Daddy and Dr Brown the dermatologist a very long time to clean and dress my skin on Sunday and I got very cross and upset so the following day the burns team took me to theatre and put me to sleep so they could wash and dress my wounds properly. They also had to put a catheter in my winky because the GVHD had spread there. Ouch!
On Wednesday night I started needing more oxygen so I was taken back to PICU and I’m now back on CPAP and all the bongs and beeps of the machines in there. I’m being really well looked after and have never seen so many people come and check on me. There’s been doctors, physios, the pain team, the ophthalmologist, the haemotologist and dermatologist. I say “seen” I’ve mostly been asleep this week as on lots of pain relief to keep me comfortable.
Dr Hartley had a bit of a shock when she got back from holiday and saw me as the last time she saw me I was smiling away at outpatients but hopefully now my GVHD seems under control I can get well enough to start having ECP again. In the meantime I have two nasty infections to fight off and I’m trying my bestest!
Lots of love