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
Well we finally made it outside. On Monday Oliver’s TPN finished in time for us to be able to take him for a walk around the outside of the hospital and to the restaurant for a cup of tea. It was so nice to be able to be able to take our baby for a walk, even if it wasn’t in the most exciting of places. Oliver seemed to like his pram anyway and slept the whole time!
But just when things were going well Oliver started spiking a temperature on Monday and today (Wednesday) it was decided his broviac line has become infected. As a result his TPN has had to be stopped and he’s had to have a cannula in his scalp to give him fluids and antibiotics. His feeds have also been stopped.
As I arrived today Oliver had just had his cannula inserted into his head and his jaundice levels have risen so he looks quite yellow and waxy. He is also back on oxygen so this all came as a bit of a shock.
As Oliver needs extra support he has now been moved to a high dependency ward where he can be monitored more closely. He has had his fair share of attention with nurses, doctors and surgeons all visiting him and deciding the best plan of action.
Oliver relies on his broviac line for his TPN and will need this line for a long time so the doctors are trying to clear the line infection with antibiotics. If Oliver deteriorates further then the line will need to be removed, which will mean another trip to theatre for another line.
It was very hard leaving Oliver today as I’ve just sat and cuddled him all day, holding his dummy while he’s been wriggling around as he’s missing his bottles. Whenever he’s been poorly before he was very young and slept most of the time but today his big eyes were looking at me and I just wanted to make it better.
Get well soon little dude!
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