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!