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Nanny’s Abseil

Hi guys

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.

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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!

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So please dig deep and sponsor Super Nanny!
https://www.justgiving.com/veronicasoar/

Love

Oliver
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6

Stuck In A Rut

Hi everyone

It’s a while since I’ve done an update so I’ve given Oliver the week off.

I’d hoped this blog would be a bit more positive than the last, but sadly that’s not the case.  Over the past week Oliver’s stoma losses continued to stay high,  hovering around one litre a day, four times more than usual and the opthalmologists had hoped for better results by now too.

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Oliver having a post theatre snuggle

On Wednesday Oliver had an endoscopy and ileoscopy in the hope that further biopsies would explain the high losses but these were inconclusive and didn’t seem typical of rejection.   The dietician had tweaked his feed too in the hope that reducing the carbohydrates might help and Oliver also had a one off dose of IV steroids but these just made him stroppy and hungry.  Yep, hungry!  The only good thing to have come out of the last week is that Oliver’s shown an interest in food for the first time which has been a joy and something I thought I’d never see.

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Oliver getting messy with yoghurt

By the end of the week Oliver’s losses had been rising and Oliver had become increasingly unsettled with it.  He was so tired yet he seemed unable to sleep for more than ten minutes, he didn’t want to lie down,  and didn’t want to play.  11 hours of sitting in the semi dark in a tiny cubicle with a whiney boy every day is not much fun so by Saturday I was more than happy to see Paul! 

I decided after a lousy Christmas and a rough week of not being together we’d go out for a nice meal…I even washed my hair specially!  
After a few days at home on school run duty Paul was shocked to see how much weight Oliver had lost. Oliver went steadily downhill over the day, and although we managed an afternoon off the ward, Oliver was withdrawn and becoming dehydrated.   Suffice to say it ended up as a late takeaway of fish and chips on our one night together!

So that brings us up to date. We have no real idea of what’s wrong which is just as frustrating for the consultants.  It could be rejection or a viral infection,  but they can’t tell.  As of today Oliver’s feeds have been stopped and he’s started PN, the IV nutrition he had as a baby that kept him alive but also ruined his old liver!  It’s something we never thought we’d see again,  but then we never envisaged any of the past two years would happen and he can’t continue to lose weight.

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My boy and the dreaded pink PN bags

This Wednesday Oliver will be having his endoscopy and ileoscopy repeated which will hopefully show something and on Friday he’ll be in theatre again to have amniotic membrane on both eyes to try and help them heal quicker. 
Remaining hopeful and positive is something we’re both struggling with, especially when you see older children still struggling or sadly not making it.  All we want is to be back home to regain a sense of normality with our little family all together.

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Only A Trickle

Hi everyone

I’m back home…on good old Ward 8 at Birmingham anyway. 

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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.

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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.

Love

Oliver
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As Predicted…

Hi guys

Well you guessed right, I’m back at BCH.

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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.

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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.

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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

Oliver
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