The good news is I’m finally home! Well I say home but I’m still in hospital alot! Last week I spent 4 days in hospital so I’m spending lots of time on the motorway which means lots of sleeping for me…not that I need am excuse to sleep!
Playing with my sister
My eyes are still really sore and both my corneas are very scratched so I’m having 4 types of eye drops and ointments. In the daytime my mean Mummy and Daddy have to prise my eyes open every 2 hours to put drops in but they do tell me it’s to help me.
My sore eyes mean I’m still very grumpy alot of the time. My favourite position is having cuddles so I can hide from the light. Because my eyes are so sore I want to sleep lots but Mummy and Daddy are trying to keep me awake so I sleep properly at night.
I’m back in Rotherham two days a week for my ECP and Dr Taylor and Dr Alfred are pleased to see how well my skin looks as they’d seen the nasty photos from Birmingham from when I was really poorly.
Enjoying a cuddle up in Rotherham with Daddy
Mummy and Daddy took me to a special corneal clinic last week last week and the specialists had a couple of ideas of how to help my eyes so we’re just waiting to see what the plan is.
The main thing now is just staying free from infection as my immune system is still very very weak and I don’t want to be back in hospital again!
That’s all for now anyway…its sleepy time!
It’s been a while since I updated you, I’ve been too busy sleeping!
I finally got off the ventilator and back on ward 8 about 3 weeks ago and quickly got off the oxygen. I’m also on overnight feeds now and have two bolus feeds of a whopping 150ml in an hour. I’m still having weekly ECP as the lovely ladies from Rotherham have been coming down to treay me. Me and Mummy got to meet Sarah-Jane Marsh the CEO of the hospital and the Chief Medical Director the other week who knew all about me and now realise how important ECP is to me.
The downside is that my eyes are still really sore from the GVHD. The opthalmologists have been keeping a close eye (pun intended) on me. Last week my left eye was pretty much healed and my right eye was still damaged, but yesterday I saw the opthalmologist again and my left eye has deteriorated again. Mummy and Daddy now know why I’ve been so grumpy and sleepy for the last few days.
My eyes are so sensitive that I can barely open my eyes and so Mummy and Daddy have to sit in the dark and I have to wear sunglasses if I go out. It’s great when I see the opthalmologist as they put some magic drops in my eyes and I can instantly open my eyes and see without it hurting and for a short time I’m happy Oliver again…they wear off too quick though :evil:.
Enjoying some fresh air
Yes, you read that right, I can go out now! Most days I go back to Ronald Mcdonald House for a few hours in the afternoon…where I mostly sleep! I’ve been on a few walks too but because I have such a weak immune system I can’t go anywhere busy which means Mummy can’t go shopping (much to Daddy’s delight).
Having my first cuddle in a very long time with my sister
On Sunday it was Daddy’s birthday and I was allowed out for most of the day so we all had a birthday lunch for Daddy at Ronald Mcdonald House with Nanny and Grandad and my silly big sister Ella.
My Daddy's birthday lunch
That’s about it for now, I’ve got to wait and hope my eyes get better and also get my blood pressure under control. I want to be home for Christmas!
Lots of love
I’m still in PICU, my longest stay…even after I had my transplant!
Managing a little play with my eyes closed
The good news is that my skin is healing up well after my last flare up. I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells! My eyes are much the same and the opthalmologists are checking my eyes regularly.
Me a week ago
On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s! Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there! Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!
I'm slowly getting rid of my bandages and I'm getting long legs like Daddy
The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections. Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator. Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!
In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!
Me and Oleg!
That’s all for now, I’m going to carry on snoozing!
Lots of love
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.
Managing a rare smile
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.
On my way to Rotherham
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.
What a sorry state I am!
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
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
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!