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The Phone Call

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Oliver on Tuesday...after pulling out his NG tube

So after weeks of Oliver becoming increasingly well we got the transplant call at 3.30am on Thursday 20th March….a potential donor had been found and Oliver would be going to theatre around 8am. 

Our initial reaction was shock,  he was doing well, his billirubin had fallen, maybe Oliver could fight this,  but once we’d woken up and done the English thing of making a cup of tea we agreed we knew this was the best time and we might not get this opportunity again.

After making arrangements for Ella we woke her and explained we were going on an adventure and that Oliver was going to get his new liver and tummy and dropped her off at her Nan and Granddad’s before heading to the hospital.

Oliver was awake even though it was early and still dark and must have wondered why Mummy and Daddy were there so early!  Oliver’s favourite nurse Amanda had him overnight and she too shared our nerves!
Packing up Oliver’s belongings seemed so odd after nearly 4 months on Ward 2 but Oliver thought it was great seeing toys he’d not seen in ages and found a cuddly hippo hilarious…making us feel more guilty for what he was about to go through.  Both Oliver’s liver and gastro consultants came to see us and as the night team nurses went home they popped their heads in to wish Oliver well.

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Oliver before theatre

We got Oliver into his gown and took him to theatre at 10.30 where I was able to hold him while he was put to sleep and the transplant coordinator said she’d update as half way through which would be around 4pm, the operation would take around 12 hours so we had a very long day ahead.

After wandering around Birmingham for most of the day we got a room at Ronald Mcdonald House where we could stay and got the update at 4pm that all was going well.  Finally our next update came at 7pm and we were told to get to Intensive Care for 8.30pm.

And there he was, our beautiful little boy fast asleep hooked up to so many lines and monitoring and he’d made it through the first big hurdle.  His poor tummy looked like it had a football in it and the surgeon said he’d aim to start closing Oliver’s tummy over the weekend.   As Oliver had such a small tummy it was not possible to close it straight away.  We met the surgeon and anaesthetist who’d without a doubt had an exhausting day and they told us it had gone as well as expected but to be prepared for setbacks. We returned to be with Oliver before saying goodnight and getting some much needed sleep. 

Yesterday we spent the day by Oliver’s side and so far so good. Being the little fighter he is Oliver was resisting the sedation and trying to grab his ventilator tube and looking around at us and holding onto our hand.  Some of the nurses from Ward 2 also came too see him.
The next steps will be to try and close Oliver’s tummy and then they can try to reduce his sedation and ventilator.  Oliver’s now on a cocktail of medication to manage his pain, infection and to stop his body rejecting his new organs and some of these will be for life.

It’s surreal to believe that less than a month after signing the consent forms the wait is over and we now just have to hope that Oliver recovers well.  Finally we can make some progress…and that’s all thanks to the family who through their own loss were able to help our little boy.

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Rice Rice Baby

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Hi guys!

I’ve had a fairly uneventful couple of weeks so thought I’d wait to give you my news!

The good news is my billarubin has dropped below 150 for the first time in a very long time!  Lots of people have commented on how I look less yellow!

On Monday I finally had my 5th central line as my last one became a bit pulled so it needed changing to reduce the risk of infection.  Hopefully this one will last longer!!

I’ve been doing well and getting stronger and enjoying lots of playing!  I’ve just discovered my tongue so my new favourite game is to stick my tongue out! 

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I'm so cheeky!

I’ve also gone up to 11ml per hour on my milk feeds and the doctors have said I can have a tiny bit of baby rice too.  Considering it’s made with my yucky modular feed it’s not too bad, I like getting it on my hands and trying to get it in Mummy’s hair!

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Now my feeds have gone up the doctors are going to try to start reducing my PN so I can have a break from it as this will help my liver and also mean I can go to that outside place!  I’ve not been able to go out since I’ve been in Birmingham and Mummy and Daddy are desperate to take me out!

The physios came to see me this week too and are happy with my progress.  They’ve given me a cool chair and table too as I’m too big for my swingy chair now!  One of the play specialists has also made Ella a special princess story to explain what will happen when I have my transplant. Sleeping Beauty gets a new liver and bowel, it’s very clever….I’m still trying my best to get out of this transplant malarkey though and do it by myself!!

Finally,  thank you to the lovely people at Alton Towers for treating my big sister to a break at Splash Landings Hotel last weekend.  Mummy and Daddy surprised Ella and she had a great time at the hotel and water park and thought it was a great little holiday!  It sounds brilliant,  hopefully I can go one day and I won’t get scared of the big flume like my wimpy sister!

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My big sis on the bunk beds at Splash Landings

Speak to you soon!

Oliver
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On The List

Hi everyone

After last week’s depressing post from my Mummy I thought I’d better take the reins this week!

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I’m now officially on the transplant waiting list so I’m trying to stay as well as possible while I wait.  My billarubin has dropped a bit so I’m doing the best I can!  I’m also gaining weight well thanks to my PN and am over 8kg now.  The doctor’s have been trying to reduce my PN but my silly blood sugars keep dropping!

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Having some tummy time

I’m still on yucky modular feeds through my NG tube and I can only tolerate 4ml an hour.  Yesterday I tried some Banana Delight though and it was really yummy.   I did have a sore bottom but thanks to some magic Ilex cream my bottom is now better so hopefully I might start to be able to manage a bit more feed.

Daddy is back to work so I won’t see him for two days.  I love my Daddy lots, he makes me smile!  Mummy’s good fun too and I like chatting to her.  I’ve learnt to shout now so I can try and compete with my chatterbox big sister!  I’m also getting better at sitting up and can nearly manage it by myself!

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Me and Mummy's selfie

I think that’s about all my news for this week!

Oliver
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