So yesterday (22nd Nov) Oliver was transferred over to Birmingham, our fourth and final (we hope) hospital. This week it was agreed that Birmingham Children’s would treat Oliver as a priority and get him admitted as soon as a bed became free.
Oliver’s new home is on Ward 8 which is the liver ward and he will spend the next two weeks having a liver transplant assessment…which sounds pretty scary but liver transplant will be the last resort so we are both hoping his liver can be repaired. Birmingham also deal with small bowel transplants so this is something else that could be explored if needed.
Paul was working yesterday so me and Ella (having a sneaky afternoon off school) went to Birmingham to wait for Oliver. He has a lovely new room and we soon unpacked and made him at home.
Oliver arriving and desperate to get out for a cuddle!
From speaking to Oliver’s consultants Anne Wilmott at Leicester and Jane Hartley at Birmingham his stoma reversal will happen fairly soon and depending on the state of his liver he may be put back together without a step procedure to lengthen his small bowel as they do not want to risk his liver working harder and becoming worse. The next couple of weeks will hopefully give us a better idea of the bigger picture.
Otherwise Oliver is doing really well. He is now solely on Pepti Junior which he tolerates well and is up to 18ml 3 hourly. His stoma losses are high but this is to be expected. Oliver is coming on so well, his head control is getting much better and he’s very alert. He listens and watches us so intently and smiling and cooing more each day.
Oliver and Ella adore each other and he smiled at her non stop when he saw her last weekend, much to her delight as she’d not seen him smile before.
The best big sister a boy could ask for!
I know a fair few of the staff on Ward 28 read Oliver’s blog so here’s a massive thank you to all of you for doing a fantastic job in caring for Oliver and making sure he got his night time cuddles too! A special thank you to Emma Green the ward sister and Anne Wilmott for always taking the time to talk to us and involve us and for treating Oliver as the special little boy he is and not just another case.
Emma the play specialist too, I will treasure Oliver’s diary forever…although you nearly made me cry with the last entry in Olivers diary!
Well, I’m still here in Leicester! The plan is that Birmingham Children’s Hospital are going to have a meeting on Tuesday (19th Nov) to chat about me and how to try and fix my liver and short bowel and then once they have a bed I can go over. I’m not sure how long I’ll be there but hopefully I’ll get to go and see the pretty Christmas lights in Birmingham! I’d like to be back with my friends in Leicester for Christmas though!
My new line is working well and I’m back in my old room on Ward 28. I felt a bit of a fraud in CICU as I was fine apart from having just had a new line so they moved me back that night after they had given me some more blood!
Christian the dietician is my new friend because I’m now having 12ml of milk 3 hourly. It means my stoma losses are quite high but hopefully it will help my liver. The bad news is that my supplies of mummy milk has run out so I’m now starting to have a new milk called Pepti Junior….it’s yucky! Mummy and Daddy both said I have to get used to it though!
I’ve had lots of fun this week, on Sunday I went for a big walk into town with Mummy and Daddy and on Monday I went in a car for the first time, it made me sleepy! I’ve had lots of good play sessions with Emma as well as Mummy and Daddy and I have been practicing my smiles too. Daddy is starting to get a bit grumpy because I don’t smile much for him so I suppose I better crack a smile for him too so he doesn’t feel left out!
My first car journey
I’m now 10lb 11oz too so starting to get too big for my babygros!
Mummy, Daddy and Ella are coming to see me soon after Ella’s swimming lesson. I’ve missed my big sister as I haven’t seen her for 2 weeks!
Speak to you all soon
Having a nice snooze
Me and my scalp cannula
I’m writing this from the Children’s Intensive Care Unit because today I have had my 3rd broviac line so have been back to the theatre again! My Mummy came down to theatre with me today and gave me cuddles until it was time for me to go in. I have been a very brave boy and I’m just resting here before I go back to Ward 28. I need to have some more blood first which I think will be my 12th transfusion… I’m a little vampire really! Hopefully my TPN will be restarted later and even better, milk!
Gowned up ready for theatre
Yesterday I had an ultrasound on my liver because the doctors are a bit worried that my jaundice is not improving and that I look yellow. So after 4 months in Leicester I am going back to where I was born, Birmingham. This time though I will be going to Birmingham Children’s Hospital where they have a special liver unit that can keep an eye on me and hopefully make my liver better. They also have a really good short bowel unit so they can monitor me there.
I’m going to miss being on Ward 28 as I’ve made friends with lots of the nurses and especially Emma the play specialist. I might be back to Leicester yet though as Dr Patwardhan, the surgeon who saved my life, is keen to finish fixing my tummy!
That’s all for now.
Lots of love