Well, I’ve been here almost a month now and I have no idea when I might be able to go home.
My GVHD seems to be under control thanks to three lots of mesenchymal stem cells but my skin is healing very slowly so I’m still needing pain relief and oxygen. I’m on a lot less than I was though and hopefully in the next week I can manage without.
As I have been so poorly I couldn’t get to Rotherham for ECP and Birmingham don’t do it. Yesterday though me, Daddy and Monica the nurse went for a day trip to Rotherham via ambulance and providing I stay well I’ll be able to go twice next week. It would be a lot easier if Birmingham Children’s did ECP and Mummy emailed the CEO of the hospital this week and the big bosses are now talking about it, so hopefully it’ll be soon! ECP is the only thing that’s going to cure my GVHD so it’s really important I get it.
I’ve seen the opthalmologist quite a few times because my eyes are really sore and dry. He thinks the GVHD is being controlled and I have loads of ointments and drops but they’re still too sore to open most of the time, so I just do lots of sleeping as I can’t really play!
I do have some good news though, and that’s that last week I managed to get upto full feeds via my NG tube so I finally got rid of my NJ. Mummy and Daddy were so pleased as they used to worry I’d pull it out at home.
Ella went back to school on Thursday so Mummy and Daddy are having to take it in turns with one of them with me and the other at home with Ella. It’s rubbish and I want us to all be together!
Hopefully I’ll be looking a bit better next time I do my blog.
Lots of love