Sick bowl at the ready
So after getting our hopes up and rushing to get Oliver’s room ready for him to come home we’ve taken a backwards step!
Oliver started needing oxygen 2 weeks ago for what the doctors thought was a virus. This combined with vomiting has led the doctors to believe Oliver actually has reflux and so yesterday he was given a new NJ tube which will feed him into his small intestine and hopefully stop his reflux. His feeds will need to be restarted slowly so to get Oliver back to full feeds may take a few weeks.
The respiratory team and physios have been looking into Oliver’s breathing issues and they might need further tests to investigate how severe the reflux is. Oliver’s had several chest xrays and there’s no sign of infection but it’s thought that when Oliver is sick he’s swallowing some which is going into his lungs and causing his breathing problems.
Oliver with his nebuliser
Until Oliver is off oxygen and tolerating full feeds he can’t come home…. so it’s looking less likely we’ll have Oliver home by his first birthday and we had really hoped to give Ella and Oliver a joint birthday party.
I can’t even put in to words how frustrated I am….just when we got the closest we have ever been to bringing our boy home we’re back to square one with no end in sight. We delayed getting Oliver’s bedroom ready for so long and now it’s finally ready and a constant reminder of how he should be home….not 60 miles away.
Sorry I haven’t updated you for a little while but it’s been a busy couple of weeks! It’s the school Easter holidays so my sister has been visiting lots and has had lots of fun at the hospital and has been given lots of Easter eggs!
I’m doing really well and on full feeds of 49ml per hour now which is all through my NG tube because I decided to pull my NJ tube out. The most I tolerated before my transplant was 10ml per hour so I’m doing really well. I’ve had a few stoma biopsies and everything is good!
I’ve been having breaks from my NG feeds and eventually I’ll be having overnight feeds so I’ll be off my feed in the day and free to play. Mummy and Daddy were able to take me to the conservatory coffee shop the other week which was lovely and lots of my hospital friends came and said hello. Some of my friends from Ward 2 have been to see me too.
Off the Ward at last
The doctors have been talking about me going home and on Wednesday Mummy and Daddy went to a discharge planning meeting with all the people involved in my care and they’re all busy getting things in place for me to go home.
Mummy and Daddy have been extra busy as they’ve just moved house so have been busy decorating every night! Ella has a lovely new room and Mummy and Daddy were painting my bedroom until late last night. I can’t wait to get home and see it!
At the moment I have a little cough and I’ve needed a bit of oxygen to help me breathe but I’m starting to get better. Mummy and Daddy are pleased because I’ve been a bit grumpy!
Me at my best!
Right, I’m off to play!
Lots of love
Phew, what a busy couple of weeks I’ve had! I’ve left my friends on Ward 2, got a new liver and bowel but I’m now back on Ward 8 where my journey at Birmingham Children’s Hospital began!
Me and my Mummy, Daddy and big sister
I’m feeling so much better now I’ve had my operation but I was pretty cross at first because I had to have a horrible ventilator to help me breathe for the first 9 days, then they gave me a horrible oxygen mask. Finally I had some nasal prongs to help my lungs but I soon showed the doctors and nurses I could do it by myself and they took them out.
Having a break from the nasty oxygen mask
My tummy is now fully closed and I only had to go back to theatre twice to have it closed and my tummy is now healing nicely and I can sit up again now, which I like as I like being nosey! My lovely surgeon Mr Shariff has been popping in to check on me lots and he said he’s my friend! He’s my friend because he’s made me better! So many doctors come and see me to check I’m doing ok and I’m starting to realise that they don’t want to hurt me! I have to have stoma biopsies to check for rejection and lots of blood tests too but they don’t hurt .
On Wednesday I moved out of intensive care to HDU on Ward 8. It’s great to have my own room again as it’s lovely and quiet…and I get to watch Cbeebies! After two days though the nurses decided I can go in a normal cubicle and I got my old Ward 8 room back!
Feeling better with Daddy
All the doctors are really pleased with me and once Mummy and Daddy have learnt how to give me all my medicines I can come home! Mummy and Daddy have told the nurses I need to get home for Ella’s birthday and then we can have a joint birthday party! This home place sounds really good and Mummy and Daddy are promising me a good bedroom!
I’m on loads of milk now, 35 ml per hour and that means that yesterday my PN was turned off, for hopefully the final time! The doctor said the next step will be to reduce my time on continuous feeds, and then Mummy and Daddy can take me for a walk outside! He said something about cars and sky, but I can’t really remember what they are! I can’t go to any busy indoor places though because my immune system is too weak and there’s lots of nasty germs about, but that’s OK and Mummy and Daddy and Ella are planning lots of picnics this summer!
That’s all for now!