So after a steady few weeks with Oliver gaining weight and overcoming his infection we didn’t get this week off to a great start!
It’s half term here so we left Oliver in the excellent hands of Ward 28 to visit Paul’s nan in Bournemouth for one night. On Monday as we were heading home, we got a call to say Oliver had spiked a temperature due to an infection and the line needed to be removed. Oliver had become poorly quite quickly and needed oxygen. By night Oliver had been to theatre before going to intensive care to recover.
On Tuesday we rushed to see Oliver who was unsurprisingly a bit grumpy but thankfully back on Ward 28. Our gorgeous boy had taken a big step back with nasal prongs and a cannula in his foot, as well as being monitored for oxygen saturation. His feeds had been stopped so he was very hungry with no TPN or milk to satisfy him. Luckily the doctor agreed to resume his feeds, and Oliver was instantly content!
A slightly grumpy boy fighting the germs
Oliver is now off the oxygen and has a scalp cannula as his foot cannula didn’t last. He is much brighter in himself and we now need to wait until early next week until the doctors are sure the infection has cleared before he goes back to theatre for his third line.
Oliver is very lucky to be visited every morning by the fabulous play specialist Emma. Emma visits Oliver before we arrive in the morning and is keeping a lovely diary of Oliver and his playtime adventures. She even managed to capture Oliver smiling at his toys this morning. ..
First ever smile on camera
Today we had our first big meeting where we met with his Consultant, the Ward Sister, Dietician, Pharmacist and Surgical Registrar to discuss Oliver and the overall plan. It was really helpful to be able to speak to everyone at the same time and although the end is not yet in sight, we do know the rough plan of action…the main obstacle to overcome being whether Oliver’s small intestine does stretch with the current procedure and if it doesn’t what happens next.
Our next steps are to start to learn how to put up his TPN so this will mean regular overnight stays with Oliver which will be a juggling act but means we’ll be ready to bring our boy home when the time is right!
The good news is that once Oliver has his new line his TPN will resume as it was with 7 hours break….so the plan to bring him home on Christmas Day is still possible.
As always thanks to everyone who has read and shared my blog.
First of all, hello to all my new followers! My blog has now had over 6000 views and I’ve got fans as far away as Australia and America!
I’ve had a good week and now weigh 10lbs 5oz! The doctors and nurses keep saying how well I look and everyone loves my chubby cheeks!
My feeds have gone up to 8ml every 3 hours which I love! Even if I’m having a sleepy day I still wake up enough to guzzle my milk!
On Monday the surgeons came to see me and put a catheter in my stoma. This is a long tube with a bung in the end and they keep the bung in for 4 hours and then take it out for 2 hours to try and stretch my intestines. I don’t mind it and hopefully it will work as I really want to see what this “home” place is like. It sounds nice!
Me and my big sis!
I’ve had lots of fun this week and Emma the play specialist has been to play with me lots. She brought me a special chair called a Bumbo and I’ve been sitting in there and trying to hold my head up. She sings lots of songs with me too and takes lots of photos for my special diary.
Mummy and Daddy have learnt how to lock my line when my TPN finishes so they have done this every day this week and that’s meant I could have a little walk round the ward with them. I love being out of my room, there’s so much to look at and lots of bright lights!
I had another bath this week and Mummy put lots of nice bubbles in and Daddy held me in the water. I splashed around a bit and decided baths aren’t actually too bad!
My big sister Ella had a day off school yesterday so she came to see me and gave me lots of cuddles and played with me. When my TPN finished we all went down
to the café for lunch but because I couldn’t have anything I had a little sleep instead!
I know when my Mummy and Daddy are with me and I love seeing them. I can almost smile and reckon I’ll get it sussed very soon! In the meantime it’s really funny watching Mummy and Daddy do silly things to try and get me to smile!
Having a nice cuddle with Mummy
My Mummy, Daddy and Ella are coming to see me in a little while so I better have a little sleep before they get here.
Speak to you soon.
Oliver has been doing really well lately and is now a whopping 9lb 11oz. He is still on antibiotics from his infection but they are due to be discontinued this Friday so we have our fingers crossed that his infection has gone.
The little dude is spending more time awake now and is really alert. It’s lovely that he now responds to our voices and looks right at us and we can interact with him a bit more. He’s still not too keen on his baths but we put him directly in the water the other day and he didn’t seem to mind it as much as when he’s in his bath seat. Rather than screaming he looked quite puzzled!
Oliver’s usual reaction to bath time!
His TPN has been able to be brought forward so his 4 hour TPN break starts at 2.30 pm and that meant we were able to take him down to Starbucks at the hospital restaurant today. It’s only the third time we’ve managed to take him off the ward so it’s still a real treat for us. Oliver even woke up to have a little look around!
Oliver also had an ultrasound on his liver last week which has shown that his liver damage has not got any worse and his jaundice levels are improving.
The bad news, however, is that his barium study has shown that he has less bowel than the surgeons had thought. He has about 20-25 cm left which is 25% of what he should have. To manage a “normal” life he needs at least 50cm so the next steps are for the surgeons to carry out a procedure to block the end of his stoma to try and stretch the intestine. This will involve another general anaesthetic and the process is likely to make Oliver unwell. This will take 6-8 weeks and when they carry out the reversal the surgeon is planning on cutting out a section of bowel and cutting it and sewing it to make a longer piece. We are very fortunate that the surgeon looking after Oliver is very experienced so we know he is in excellent hands! It’s likely this may postpone Oliver coming home and he will need TPN longer term so we will soon start to train how to manage his TPN at home.
We remain positive that we will finally get our gorgeous boy home one day and in the meantime we need to make the best of the situation…. we can guarantee Oliver will have the best decorated room in the hospital at Christmas!
As always, thank you for reading and following our little hero’s journey.
Oliver and Daddy in the coffee shop
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
After a week of good progress we’ve had yet another set back, this boy knows how to keep us on our toes!
On Tuesday Oliver’s scalp cannula was removed, his feeds increased to 4ml 2 hourly and his urso (medicine for his jaundice restarted) and he was alert, happy and all looked good!
Oliver enjoying a nice cuddle with Daddy
On Wednesday we noticed a strange rash on Oliver’s left leg so vitamin K was started, thankfully this hasn’t spread or got any worse. He was due an eye check up this week but it was decided to postpone this until he’s better. We had signs Oliver wasn’t himself on Thursday and Friday as he’d been unsettled for the nurses and very sleepy when we visited. The decision was made yesterday to move Oliver back to Ward 12 for closer observation over the weekend and another antibiotic has been restarted. Whilst all of Oliver’s observations have been good his haemoglobin levels were a little low so he’s now had his tenth blood transfusion!
Oliver has been visited by the physios this week who have been great at suggesting exercises to strengthen his neck and encourage him to face the other way as he tends to favour facing to the left and is getting a wonky head!
We also met another member of the surgical team yesterday and they will be doing a barium study on Oliver, once he is well enough, to see the progress of his gut. We were given another reality check when he explained that even when the stoma reversal takes place there is no guarantee it will be a success and another stoma may be needed.
At the moment it feels we will never see the day we get to bring our boy home but we’re trying our best to stay upbeat!
On a more positive note we had a meeting with Action Medical Research this week who are funding a study into the causes of NEC at the moment and I will soon be sharing our story with them. Oliver took part in the Dove Study
before he developed NEC and hopefully his results might give some clues to why this terrible disease occurs.
One gorgeous sleepy boy having some tummy time.
Until next time, keep sharing and following on Twitter @franhjones!