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
Sorry I didn’t write an update last week but I was feeling a bit poorly.
I got to see my big sister last weekend and we had a big cuddle. She’s a bit silly but I really love her because she always gives me my dummy when I whinge!
After 2 days on Ward 12 I was moved back to Ward 28 as they realised I wasn’t that poorly. I’ve got a new room right next to the nurses desk so I can shout when I want some attention!
I’ve had a busy week this week. I’ve been visited by the physios who’ve been checking on my neck muscles. Mummy and Daddy sit me up and wave toys to get me to turn my head and keep telling me how clever I am! I’ve also seen the dietician who said I can have 5ml of milk every 3 hours. I want him to let me have more but he won’t let me!
As I’m now a bit better on Wednesday I had my eyes checked which I hated (that’s why I’ve pretended to be ill for the last 2 weeks!) and they’re growing as they should be so no more nasty lasers!
On Thursday I got to have my barium study so my Mummy and Daddy are now waiting to find out if my intestines are growing! I had to have a chalky drink so they could do their special xray but Mummy and Daddy didn’t know so they freaked out when they checked my stoma bag and it was all white, ha ha!
Emma the play specialist came to play with me as well and did hand and foot prints with me. I didn’t really like having my hands done so she got a bit messy trying to get me to flatten my hand.
Phew, it’s making me sleepy just sharing all my news so I’m off for a nap now.
Lots of love
Sorry I didn’t update you all last week but I was feeling pretty poorly. I’ve mostly been resting and fighting those germs.
This is me sleeping on my Mummy’s chest!
I had 4 days on Ward 12 where the nurses could keep a closer eye on me. They soon realised what a tough little guy I am when after 2 days I took my oxygen nasal prongs out by myself and managed just fine and I moved back to Ward 28 on Saturday night.
Daddy had a shock when he came to see me on Thursday. Mummy had warned him I was a bit yellow but he decided I looked like a corn fed chicken. He’s so cheeky….I’ll get my own back when he changes my nappy next!
After 48 hrs with antibiotics locked into my broviac line to try and kill those nasty germs, the doctors tested my line again and it was ok so on Friday night my TPN got restarted. I have had to have lots of blood tests, which means getting jabbed in the foot, but the doctors are happy that the magic numbers are getting better and I don’t look so yellow either.
I have missed my bottles so much and have been a bit of a diva demanding my dummy. ..a boy’s got to have some pleasure! Thankfully the doctor said I could start having bottles again today so my Mummy and Daddy gave me 2mls of milk every 2 hours today. It tasted so good even though it was only a tiny bit.
I still have my silly hat too as I need my cannula for my antibiotics for a few more days yet. The nurses try and wrap me up so I don’t pull at it but I’m quite good at wriggling!
I had my photo taken for the Leicester Mercury too as Mummy is trying to make people aware of how nasty NEC is and for this blog!
That’s it for now as I’ve got to get some rest as my noisy sister is visiting with Mummy and Daddy tomorrow as she’s got a day off school.
Keep following my mummy on Twitter @franhjones and my blog.
If you feel generous please donate via the Donate tab as this will help the NNU ward where the lovely doctors and nurses helped me get better.
Lots of love
So I hear my blog has had over 700 views now, impressive hey (a little like me!).
On Monday night I moved to my new home on Ward 28 at Leicester Royal. It’s a children’s ward so it has lots of bigger kids as well as a few babies like me. I’ve got my own room with a big boys cot and I’ve got my toys to make it nice.
My sister will like it here because there’s a TV in my room and a big playroom. The play specialist is even getting her a card and present for when she visits at the weekend. ..and I thought I was the special one!!
I’m now having all my feeds (4ml 2 hourly) in a bottle so I don’t have to have a silly NG tube up my nose anymore. Everyone thinks I’m really sleepy but I know when theres a bottle in front of me and quickly make it disappear!
I got to have a nice cuddle with my mummy today but I was a bit too tired to play…I’m saving my energy for when Daddy comes to visit as well tomorrow.
Talk to you all soon.
As if being an hour away from Oliver wasn’t bad enough I’ve got a sickness bug so haven’t been able to see Oliver for 2 days so far. Good job Paul is taking lots of pictures for me although he’s back at work tomorrow so he won’t get a visit. I want to see him so much but need to know I’m not going to pass on my germs!
Oliver was moved from NNU to the children’s ward last night and has a side room because he’s young and in isolation. His favourite nurse Keara got him all ready for his move doing his care, changing his stoma bag and putting a fresh baby gro on and took him to the ward. He now has a full size cot so looks tiny in it.
Oliver now weighs 3kg (6lb 10oz)