Just when I thought I was about to see the back of my stoma I got poorly! I got RSV virus and now have bronchiolitis and another line infection so I’ve been feeling rubbish all week.
Last Saturday my line tore so on Monday the clever nurses came and made a temporary repair so I can still have my PN. Mummy and Daddy were then told that I have RSV virus that causes bronchiolitis so I couldn’t have my stoma reversal as it would make me too poorly.
By Tuesday I had spiked a temperature and was being sick and feeling yucky. It was really hurting when I was coughing and I’ve been really wheezy. I’ve not really been wanting my bottles so have been having most of my feeds through my NG tube.
Having a bottle and holding Daddy's hand
The doctors said I would get worse before I started to get better and they were right. On Thursday I started having oxygen as I was struggling to breathe by myself and also was really sick on Daddy a few times!
My liver has got a bit worse because I’ve been so ill so Dr Hartley wants my stoma reversing as soon as I’m better and they will put a new line in at the same time.
I’m starting to feel a little bit better and am sleeping lots! I’ve kindly shared my germs with Mummy and Daddy so they’re both poorly too!
I hear it’s 3 days til Christmas so here’s hoping we’re all better! Mummy, Daddy and Ella are coming here to spend the day with me!
Happy Christmas everybody
Hope you’re all good and looking forward to this Christmas thing. I’m not too sure what it’s all about but it sounds like there’s new toys involved, so that sounds good to me!
I’ve had a pretty good week and have been smiling and giggling lots! I can use my arms more and love waving them around and trying to touch Mummy and Daddy. I was giggling loads at Mummy the other day and she started crying. Daddy’s right, she’s silly.
Me sitting in my bumbo with Mr Cow, my favourite toy
I have got my first cold though and have a horrid cough so I’m being a bit lazy with my milk and the nurses have been putting it down my NG tube instead.
Mummy and Daddy started their PN training this week (its called PN now as it’s partial nutrition not total nutrition) so they’ve disappeared off a few times to do that. Mummy was moaning because she’s had to get rid of her nice nails but she said I’m worth it!
The surgeons came to see Mummy and Daddy yesterday too and they’re still planning to reverse my stoma next week and it could be any day from Tuesday onwards. Hopefully the surgeon will be lucky when he opens me up and finds more bowel tham they expect as otherwise I might lose my ICV which is a sort of one way valve between my small and large bowel and maybe my appendix too. The surgeons can’t lengthen my bowel at the moment so hopefully I will be ok or otherwise they may lengthen it when I’m bigger.
I will try and update you all next week but I will get Mummy to write if I’m a bit poorly after my operation.
Lots of love
Our gorgeous boy
We’ve had a good week at Birmingham Children’s and this week Oliver moved to Ward 2 as his liver transplant assessment has been cancelled because his liver is not as bad as was suspected. It will continue to be monitored but hopefully his jaundice levels will start to fall.
Oliver is gaining weight well and tolerating his feeds of 26ml 3 hourly. He was 12lb 11oz when he was last weighed!
Oliver will soon be catching his sister up!
After several days of no news on Thursday we met with the gastro team who advised that they propose reversing Oliver’s stoma before Christmas. The decision to do this is largely based on his liver damage which is a result of him needing a large amount if time on TPN and to wait for his small bowel to grow would take a very long time. This is the moment we’ve been waiting for since August so we’re over the moon…but also apprehensive. One thing’s certain, we won’t miss leaking stoma bags! His poor skin is getting really sore as the bags are leaking more… having a washing machine on the ward is proving a god send!
We also met the team who will be training us up for home TPN and we will start our training tomorrow (9th Dec). We will also need a home assessment to make sure we can manage TPN from home and identify any adaptions we need to make to our house. After 6 months of uncertainty and not knowing if and when our boy would be home we can finally start to think about preparing his nursery. Getting him home will still be a little while off but it feels like the end is nearly in sight.
Up until now we’ve only had one photo of the four of us and today we had a photographer friend, Rachel Wilks, join us at the hospital and she’s taken some lovely pictures for us.
My amazing family
Me and my nee naa vest (my Daddy drives one of them!)
Sorry for taking so long to update you but I’ve had a hectic week with meeting new people and of course doing growing. I’m now 12lb 2oz! Mummy is pleased as it gives her an excuse to buy me new clothes!
I’m settling well into Birmingham Children’s Hospital and winning over the nurses with my dashing good looks and winning smile! I’m getting stronger everyday and have learnt how to hit my toys. I love sitting upright now so I can see what’s going on!
Me sitting like a big boy!
I started the week with lots lined up so the doctors could check out my liver but by Tuesday they decided my liver wasn’t all that bad so they wouldn’t carry on with their plan! Still, I have had an ultrasound, a brain scan and a barium study!
On Tuesday my Mummy and Daddy met my consultant Jane Hartley who explained that my liver is improving so my care will be transferred to the gastro team. Dr Wong my new consultant came and had a long chat with Mummy and Daddy and they will soon be coming up with a plan on when to put my tummy back together….and get me home! Because Ward 8 is a liver ward I will be moving to Ward 2 soon.
To get me home Mummy and Daddy will soon be trained on TPN and there’s lots of other things for them to sort out. Of course I need a nice bedroom to come to!
I have also had some special tests done on my stoma poo to see what I can and can’t absorb and I’m now on special feeds called modular feeds where my milk is specially made for me depending on what ingredients I need. So I’m now having 26ml of milk every 3 hours and at night time I have continuous feeds through an NG tube. So I have a silly tube up my nose again and so far I haven’t pulled it out!
I have mastered sucking my thumb this week too but still like to mix it up and have my dummy sometimes as well! I have made Mummy and Daddy smile lots this week by starting to giggle too!
I made it into the local paper (Leamington Courier) this week as well with my Mummy, Daddy and big sister to share my story of NEC.
Look! That's me!
That’s all for now!