It’s been a fairly uneventful week on Ward 2 this week. I’m feeling pretty good and have been enjoying lots of playing with Mummy and Daddy. I’m getting pretty tickly and giggled lots the other day!
I’ve been back on my milk for most of the week and I’m just having it through my NG tube. Mummy has now been signed off to do my feeds and Daddy isn’t far behind! I’m up to 7ml per hour so I’m nearly back to to what I was having before my surgery. Hopefully this means I can have my PN reduced soon and then I might even be able to escape from the ward for a little bit.
Practising sitting up with Mummy's help
The surgeons are happy that the operation went well and that I am pooing so they won’t be checking on me anymore.
Dr Hartley came to see me the other day and gave Mummy a pretty graph showing my billarubin levels and they’re looking OK at the moment…but they need to come down further. I also had a blood top up this week as my haemoglobin had dropped.
Mummy and Daddy have rearranged my room this week as I always look to my left and they’re worried my head will stay a wonky shape so they’ve tricked me and moved my cot so I have to turn the other way to see what’s going on! I only have a boring wall to look at otherwise so I suppose they’ve won!
Me turning my head the other way for a change!
That’s it for this week!
Speak to you soon
The good news is Oliver recovered from his bronchiolitis and line infection in time for Christmas. Oliver clung on to a trickle of oxygen but I gave him a talking to on Christmas Eve and he did as he was told and was in air and full of smiles on Christmas Day. Santa brought him a jumperoo which he loves although his little legs don’t yet touch the floor. He was spoilt rotten and has lots of lovely new toys and clothes at home waiting for him as well as presents donated by Birmingham City FC, Starlight, Radio Lollipop and the lovely nutritional team.
Oliver is coming on massively with his development and is now full of smiles and giggles. He was assessed by the physios on Monday and is on track with his development for his corrected age of almost 4 months but needs to be persuaded to have some more tummy time.
Both Paul and me have started our PN training and yesterday we had our home assessment by the community nurses to discuss PN at home which was all very positive.
So while Oliver has turned a corner and seems to be doing well we were optimistic that his stoma reversal would take place shortly…however we were dealt a new blow yesterday when the liver consultant Dr Hartley said his liver is a cause for concern and he cannot be reconnected until they are sure his liver can cope. It’s a catch 22 situation as for Oliver’s liver to recover he needs to tolerate more feeds and less PN…but that can’t happen without reconnection which poses a threat to the liver at the moment! Frustrated doesn’t come close! The next steps are to do an ultrasound on his liver and spleen and to do a liver transplant assessment which will take a couple of weeks.
We remain hopeful his liver is stable enough for the reconnection as we don’t even want to consider the need for a transplant right now….we just want our boy home.
Here’s hoping 2014 will be a more positive year.
My awesome family on Christmas Day
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.
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
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.