It’s been a boring couple of weeks really with not much to report. The highlight has probably been moving into a bigger cubicle! I was in the smallest cubicle before and just to get out and play Mummy and Daddy had to move my cot and pump stand so I could play on the floor…but now I have a big room with a nice big window!
I went back to theatre again last Thursday to have the stitches taken out of my cornea transplant in my right eye and had some more amniotic membrane in my left eye and they’ve partially stitched my eye shut to protect it and hopefully that will help the bandage contact lens stay in. The opthalmologists think I have the lost the sight in my right eye but they’re monitoring it closely to make sure the infection has gone.
I’m getting nowhere with my feed and my stoma losses are still high and randomly even higher some days. I’ve had a few viruses too so am currently needing oxygen, so even when I’m free from my PN, I’m still confined to my room.
Playing while I have my nebuliser
Ella was here most of last week because it was half term so it was nice to see her, when she wasn’t gallivanting round the ward that is. Mummy and Daddy have swapped round this week so I’ve been with Daddy so far this week and Mummy will be coming to switch with Daddy tomorrow. Daddy thinks I’m getting poorly as I’ve been really sleepy and my blood pressure is really high too so the doctors are keeping a close eye on me. Jane, my consultant, is on service this week so I’m in extra good hands!
I love my Daddy!
As well as Nanny doing her abseil, my other Nanny Julie is going to do a skydive when she goes to Las Vegas in March. She will be doing this to raise money for Ronald Mcdonald House as they are fantastic and Mummy, Daddy and Ella spend more time there than our proper home. We are very lucky to have a Ronald Mcdonald House near the hospital as it means they can all stay near me.
You can sponsor Julie here www.justgiving.com/Julie-Goodwin3
Anyway, time for more sleepies
It’s going to be a quick one as my eyes are really sore. I had to go to emergency theatre last night as the opthalmologists were worried about how sore my eye was. They found an infection and I’m now having hourly antibiotics and drops in my eyes and IV antibiotics. Yesterday was a very long day so today I have slept all day because I feel rubbish.
Anyway enough about me! My crazy but lovely Nanny (who is scared of heights) is going to abseil 100ft off the Fort Dunlop building in Birmingham on 7th March to raise money for Birmingham Children’s Hospital. She only started raising money last week and has already done really well, mainly because people can’t believe she’s doing it but also to give something back to the hospital who have saved my life… on more than one occasion!
So please dig deep and sponsor Super Nanny!
Another couple of weeks have passed and I’m still here and there’s been no real changes.
I need a haircut!
My stoma output is still high which is restricting how much feed I can have. Last weekend Mummy and Daddy had a scare as my stoma output had a lot of blood in and I also had blood out of my redundant bottom. I had an endoscopy and ileoscopy on Monday which showed I have colitis, which is inflammation of my original bowel so I’m having steroids. Everyone was worried it was internal GVHD as my skin was going red at the same time, but thankfully it’s not!
My skin had started flaring again but I had one day of ECP (my line was being naughty so I missed a day) and steroid cream and it’s now looking OK.
The opthalmologists had been pleased that my eyes were stable but this weekend they’ve got more sore and so Mummy is going to have a chat with them. I’m still having hourly eyedrops and with talk of me going home Mummy and Daddy need a plan as they can’t be getting up in the night to do my eyes and I’m getting pretty cheesed off with being faffed with all the time. I’m the only child in the UK with eyes so bad from GVHD so the opthalmologists are speaking to the Sick Kids Hospital in Canada for advice!
I had a good start to the week but have been a bit grumpy for the past few days. I also went to theatre again on Friday and now have a new broviac line for my PN. Mummy and Daddy have started PN training again so hopefully they’ll soon be flushing my line and putting my PN up so they’ll be ready to do it at home! Today Mummy flushed my line and put my PN up for the first time.
Ella is also becoming a very good nurse! She’s been too busy playing with her friend Madiee to come and play with me, so I have to shout at her when she comes in the room. Her dolly now has an NG tube and a stoma bag!
Ella and her brave friend Madiee
It was also Mummy’s birthday so Daddy and Claire the play worker helped me to make her a card and decorate my room for her. Daddy tried to make sure Mummy had a good day even though we’re in hospital. Mummy and Daddy don’t seem to have many friends left, because of me I think, but the ward got Mummy a card and present and that made her happy and Nanny and Grandad got Mummy a nice present and looked after Ella so Mummy and Daddy got to go for dinner.
That’s it for this week!