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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It’s been a pretty uneventful week on ward 28 this week so I’ve spent a fair bit of time sleeping. All this resting is paying off as I’m now 3.4kgs. The surgeons are going to do a contrast scan in a couple of weeks where they’ll be able to see how my bowel is growing and when they might be able to put me back together!
On Thursday my Mummy took me out of the ward for the first time. I didn’t have a clue where we were going and it was bright and noisy. We went to the coffee shop and I could tell Mummy liked being off the ward with me for the first time as she nearly got happy tears!
My Mummy and Daddy promised me they’d take me to the park with my big sister today but my blood sugar levels have been a bit low so my TPN has had to be slowed down so we didn’t get chance to go. I was looking forward to going to this “outside” place they talk about as well! I did get to see the playroom though and it looks fun..but hopefully I will be home before I’m big enough to play in there.
My milk feeds have been increased a little bit too which is good as I love my milk. I’m having 8ml 3 hourly. I just wish there was more! I have special medicine too to help my liver which is a bit sour but I like it. Mummy and Daddy laugh because I pull a funny face and smack my lips together when I have it!
That’s all for now. Let me know what you’d like me to tell you next time.
PS. Because I don’t look poorly this picture shows why I can’t go home. The line in my chest is where my TPN goes and below that is my stoma.
Hello everyone and a massive thank you for sharing and reading my blog. We’ve now had almost 2000 views!!
Oliver has now settled in well on the children’s ward and becoming more alert and awake during the day…although he’s still a bit of a night owl.
Oliver’s big sister Ella visited on Saturday and loved the playroom on the ward and being able to play with Oliver as he was wide awake!
The consultant visited us on Friday and the plan is to continue to increase Oliver’s feeds providing he tolerates them and to slowly increase the time he spends off TPN. Oliver’s feeds have now gone up to 7.5ml 3 hourly.
Oliver is displaying signs of jaundice as the TPN affects the liver so this needs monitoring. The plan remains for Oliver’s stoma reversal to take place around Christmas time so we’ve set ourselves a new target to have Oliver home by which is Easter. (Sigh!)
Our latest drama is leaking stoma bags and we had to change Oliver 3 times yesterday! Oliver showed his impressive tummy muscles off by managing to spray poo into the air mid change too, it was like a fountain! Cue a bed sheet change too.
Unfortunately I can’t visit Oliver today as following the virus I had last week all my joints have become badly affected and I can’t move around very well and ended up at the local hospital at 4am as was in agony! I’m sure I spend my whole life in hospital! I’ve never suffered like this before and its very frustrating but hoping rest will help and I can be back with him tomorrow.
Please continue to read and share my blog. Oliver’s currently thinking of inspiration for his next instalment!
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)