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.
Having a break from my mask
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!
So pleased to see my big sis!
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
Since my last blog my GVHD has got a lot worse and it’s really getting on my nerves. It’s really painful and itchy and I’m now having IV pain relief to try and keep me comfortable.
The blood tests I had confirmed it wasn’t chicken pox and the doctors gave me some high dose steroids to try and stop the GVHD but they didn’t work. Dr Gupte has worked really hard to get me some mesenchymal stem cells from London and I was given these yesterday. Nobody really understands how they help but they have been effective in reducing GVHD before so hopefully they will help me.
The doctors were worried I might be too poorly to have my ECP in Rotherham this week but it was agreed I could go, so me, Mummy and a nurse called Chris who has looked after me lots went up by ambulance. I was so tired I slept all the way there and through my treatment. We came back with the flashy lights and nee naas but I slept through it all.
In the ambulance on the way to Rotherham
On Thursday morning my right eye blistered really badly and the ophthalmologist reviewed me yesterday and the bad news is that the GVHD has spread to my eyes and I have scarring on my right eye. I’m now having steroid eyedrops every 2 hours to try and stop it developing further as it could affect my sight.
My poorly eye
So we now have to wait and hope the stem cells start to work and quick because my skin is getting worse every day and it’s not much fun😭
Lots of love
I’m writing this from Ward 8 at Birmingham Children’s Hospital. I was meant to be spending the weekend at the seaside but instead I came here 😐
Me at Rotherham
I went up to Rotherham for my ECP on Thursday but they were worried about my rash as it had got worse on my back and tummy so me and Mummy had to come back down to Birmingham after just one session. My rash got worse very quickly and the doctors were worried it could be chicken pox as I had spots as well as a worsened rash. Because I’m so immunosupressed chicken pox could make me very very poorly so the doctors have to be extra vigilant. I’ve had lots of blood tests but the consultants think it’s a flare up of my GVHD so I’ve been having big doses of steroids all weekend and they’re going to try and get me some magic stem cells too.
Look at my poor skin!
Luckily I’ve been able to escape from my tiny cubicle and spend some time at Ronald Mcdonald House with Mummy and Daddy. Yesterday Mummy cooked roast beef and I tried some gravy and custard.
Ronald Mcdonald House is amazing as it’s a charity that provide accommodation to families who have a child in hospital and definitely much better than sleeping on a camp bed on the ward. It also means we can stay as a family so on Friday night Ella stayed with us too and Oliver was very pleased to see his big sister! Next time you’re at McDonald’s make sure you put your change in the collection box on the counter as this all goes to this fabulous charity.
Having Sunday lunch at Ronald Mcdonald
It’s been nice to see some of my old friends like the cleaners, doctors and nurses but I want to go home now!