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!
It’s me OJ, back again.
Since Mummy’s last blog not much has happened…and I’m still not ready to go home…
I had more membrane put on my eyes as they weren’t healing as quick as the eye doctors had hoped. They were hoping to remove half of the stitches from my cornea transplant but the graft hadn’t taken so they’re leaving it a few more weeks. The silly contact lenses keep coming out so the eye people have to keep coming back and upsetting me. My eyes were getting really dry overnight so now I’m having drops every two hours overnight and now my eyes feel much better in the morning.
My stoma has still been being naughty and that’s what’s keeping me in hospital. The doctors don’t really know why, it’s not infection and it’s not rejection so they’re scratching their heads! It could be one of my medicines so they’re going to stop that and see and if it’s not that then I’ll have to have another endoscopy.
I’m on PN for 20 hours a day so this means I can’t really leave the ward although me and Mummy managed to escape to Ronald Mcdonald House yesterday for two hours. I was so happy to go in my pushchair and me and Mummy played on the bed and had cuddles.
I really want to go home now as I’m getting bored in hospital in my silly, small cubicle. I’m getting much stronger and enjoying lots of playing and standing up with help. It’s a bit hard as Mummy and Daddy have to move my cot every time I want to play on the floor, but I enjoy it. I’m making lots of new noises too and like shouting at people when they come in! Last week I got a drum so I like bashing that. Heather, the lovely lady who cleans my room everyday got it for me as she knows I like bashing toys.
Me and my drum!
In other news, a little girl who was on the ward sadly went to a hospice last weekend as her GVHD had flared so badly that there was nothing more the doctors could do for her and she lost her battle last week. We had GVHD at the same time and the opthamologists said we had the worst GVHD eyes in the country so it’s very sad that she’s not managed to fight it. Ella used to play with her brother and sister and they were a lovely family so we are thinking of them.
Well that’s it for now! I’m off to rest, ready for another day of playing!
After a good week last week and only needing a little bit of oxygen at night Daddy and Ella came up to see me last Friday after school. I was really pleased to see them!
My big sis seeing the Christmas bull!
On Saturday morning Mummy and Daddy found out I’d managed without oxygen so Dr Abel Hady said I could go home for the weekend! It was brilliant! When I got home I had a lovely big sleep while Mummy, Daddy and Ella made the house all Christmassy! Then on Sunday Nanny and Grandad came round and Mummy cooked a big roast lamb dinner. I just played on my mat though!
On Monday morning Daddy had to bring me back to BCH for my ECP. The eye doctors had had another look at my eyes before the weekend and decided they weren’t improving quick enough and Mummy and Daddy agreed I should have an amniotic membrane on both my eyes on Tuesday. This would act like a bandage and cover the scratches and help my eyes heal.
All ready for theatre
On Tuesday I went to theatre but unfortunately Mr Paruleker found I had a big perforation in my right cornea so could only put the membrane on my left eye. He filled the hole in theatre but when the consultant checked my eye on Wednesday fluid was still leaking through into my eye and they decided I need a cornea transplant and fast or I would lose my eye. Mummy and Daddy were really upset and Ella was too as this would probably mean I couldn’t be home for Christmas.
Luckily Professor Shah was in BCH yesterday who is a cornea expert and there was a spare cornea so at 6pm last night I went to theatre! At the same time Mummy packed at home and Daddy came home and now I have Mummy, Daddy and Ella with me! It means Ella’s missed two days of school but she doesn’t mind as she gets to join in the carol concert in the hospital chapel this afternoon.
In the meantime I’m having ECP and playing happily even though I look like a pirate!
Ah me hearties!
That’s all for now. Whether I get home for Christmas remains to be seen but I’ll keep smiling.
I’m back home…on good old Ward 8 at Birmingham anyway.
Yep I'm a Superman.... a lazy one
I finally got off the ventilator last Wednesday in Sheffield so that made it a bit easier to get back to BCH and last Thursday me and Daddy managed to get transferred. I was glad to get back and after a week with just Daddy I was really happy to see Mummy and Ella at the weekend. Now its just me and Mummy so I’m getting a bit bored of her now and want to get home and see Daddy and silly Ella!
I’ve done well this week and quickly got off the oxygen, but overnight I’ve been needing the tiniest trickle of oxygen and that’s what’s keeping me here! Mummy keeps telling me to behave at night but each morning she’s found out I’ve had oxygen.
Today Tracy is coming down from Rotherham so I can have ECP which is good as I missed out last week because I was in Sheffield. My skin looks good though and is almost completely better.
Being back at Birmingham means I can have my special blood serum eyedrops and I’ve been opening my eyes a bit more this week! The opthalmologists have been to see me and there seems a tiny improvement.
Me happy after having my anaesthetic eyedrops so the opthalmologists could examine my eyes
I really want to go home now and for us to be altogether again! I really really don’t want to spend another Christmas in hospital and nor do Mummy, Daddy or Ella.
I had a good weekend and on Monday night Mummy got to take me home. I was so happy to be home and have cuddles with Ella and sleep in my own bed!
Escaping from BCH
Being home was short lived though as on Thursday I was heading back to Rotherham for ECP but Mummy was hoping to be home by Friday lunchtime.
My ECP treatment went well on Thursday and I had good fun kicking toys in the cot and shouting which Tracey the nurse thought was funny! Then it was back to the Premier Inn with Mummy to watch Eastenders and have a cuddle before bed.
Overnight Mummy noticed I sounded a bit snotty and at 3am I had two aponeas (I stopped breathing) and Mummy had to call an ambulance and I went to Rotherham A&E and had oxygen. In the morning I went up to the Children’s Assessment Unit where Nick looked after me. Rachel from Photopheresis came up too but I was too poorly for ECP but she stayed and helped look after me. I started getting very tired so an anaesthetist decided to give me some help and I was put on a ventilator. So many people came to help me, and being up north they made sure Mummy had a cup of tea!
Rotherham doesn’t have an intensive care unit which is what I need and Birmingham Children’s didn’t have any beds free so the Embrace transport team have brought me to Sheffield Children’s Hospital which is where I am now. This is my 6th hospital so another set of doctors and nurses for Mummy and Daddy to meet!
Here we go again...
I have had lots and lots of tests done but at the moment the doctors think I have developed bronchiolitis. I had pesky bronchiolitis last Christmas which made me poorly but because my immune system is very weak I can’t fight it now. I’m still on a ventilator and sedated but the doctors have weaned it down a little bit.
Hopefully I’ll get to Birmingham Children’s Hospital soon once a bed is free and then I have to get better and get home because Ella is waiting to put the Christmas tree up.
Lots of love
Well you guessed right, I’m back at BCH.
I love my Daddy so much I decided to eat his nose!
Last Sunday I had a bit of a rubbish night and spiked a high temperature so Daddy ended up bringing me in on Monday night once a bed was free. The doctors were great, well they were nasty actually and put a cannula in my foot, but they started antibiotics straight away and did blood tests and took swabs. My oxygen saturation wasn’t great either so I had oxygen for a couple of days.
My face has been a real mess, hence the lack of photos this week. My face started scabbing and because I fidget alot this meant my face kept bleeding. I have new steroid cream though and it’s starting to improve.
Scabby but smiling
Dr Hartley thinks this flare is from a virus… and I’ve not been anywhere so I’m going to be completely housebound when I get home! Mummy and Daddy will have to be super strict with visitors too and hope Ella doesn’t bring any bugs back from school.
This week I also got my special blood serum eyedrops and I started these yesterday so hopefully these will magically make my eyes better. Apparently I’m the first person at BCH to have these and I know the doctors had to work hard to get me them!
After spending the week with Daddy, Mummy and Ella came over on Friday night and on Saturday I was allowed out to Ronald Mcdonald House so I had lots of fun playing and being silly! On Saturday night once I was tucked up on Ward 8 Mummy, Daddy and Ella went to the German Christmas Market and for dinner. Once I’m home we won’t be able to go and do things as a family because of the risk of infection, so I didn’t mind them going out with me. I’m not allowed mulled wine anyway! Today Nanny and Grandad came to see me and me and Nanny had big cuddles over at Ronald Mcdonald House.
Mummy, Daddy and Ella having a night out together
That’s it for now and hopefully by my next update I’ll be back at home and getting ready for Christmas!
Lots of love
Well, I had hoped I was home to stay but my GVHD seems to have other ideas. I started getting a bit of a cough and cold a couple of weeks ago and that seems to have caused my GVHD to flare again as about a week ago my face started getting red and it’s breaking down now. I have a couple of new patches on my body too.
My poor sore face
Daddy took me to Rotherham for ECP last week and Dr Alfred had been hoping to reduce my steroids, but instead I’m now on 10mg everyday to try and get the GVHD to back off. As a result I’ve only had one happy day which Mummy, Daddy and Ella loved….but since that I’ve been pretty miserable and sleeping lots. My cough keeps waking me up at night though so Mummy and Daddy are getting very tired! I’ve sicked quite a few NG tubes out too and decorated both Mummy and Daddy, oh and Ella too! I like to spread the love!
Me and Dadda
My eyes are much the same but behind the scenes at Birmingham Children’s Hospital the opthalmologists are arranging for me to have some eye drops made from filtered blood which will hopefully help and I should get these soon. I’m going back to BCH on Friday too so the opthalmologist can have a look at my eyes when I’m asleep and he might block my tear ducts to help my eyes keep moisture.
Mummy and Daddy are watching me like a hawk and Mummy and Dr Hartley have been speaking and emailing lots about me. I want to stay at home but if my skin gets worse I’ll have to go back and that might mean spending another Christmas in hospital and that’s not what me or my sister want.
Me and my lovely sister
I need to go have a nap now.
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