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Something’s Brewing

Hi guys

It’s been a boring couple of weeks really with not much to report.  The highlight has probably been moving into a bigger cubicle!  I was in the smallest cubicle before and just to get out and play Mummy and Daddy had to move my cot and pump stand so I could play on the floor…but now I have a big room with a nice big window!

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I went back to theatre again last Thursday to have the stitches taken out of my cornea transplant in my right eye and had some more amniotic membrane in my left eye and they’ve partially stitched my eye shut to protect it and hopefully that will help the bandage contact lens stay in.  The opthalmologists think I have the lost the sight in my right eye but they’re monitoring it closely to make sure the infection has gone.

I’m getting nowhere with my feed and my stoma losses are still high and randomly even higher some days.  I’ve had a few viruses too so am currently needing oxygen,  so even when I’m free from my PN,  I’m still confined to my room.

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Playing while I have my nebuliser

Ella was here most of last week because it was half term so it was nice to see her, when she wasn’t gallivanting round the ward that is.  Mummy and Daddy have swapped round this week so I’ve been with Daddy so far this week and Mummy will be coming to switch with Daddy tomorrow.  Daddy thinks I’m getting poorly as I’ve been really sleepy and my blood pressure is really high too so the doctors are keeping a close eye on me. Jane,  my consultant,  is on service this week so I’m in extra good hands!

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I love my Daddy!

As well as Nanny doing her abseil, my other Nanny Julie is going to do a skydive when she goes to Las Vegas in March.  She will be doing this to raise money for Ronald Mcdonald House as they are fantastic and Mummy, Daddy and Ella spend more time there than our proper home.  We are very lucky to have a Ronald Mcdonald House near the hospital as it means they can all stay near me.
You can sponsor Julie here www.justgiving.com/Julie-Goodwin3

Anyway, time for more sleepies

Oliver
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Still Clueless

Hi guys

It’s me OJ, back again.

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Hi guys!

Since Mummy’s last blog not much has happened…and I’m still not ready to go home…

I had more membrane put on my eyes as they weren’t healing as quick as the eye doctors had hoped.  They were hoping to remove half of the stitches from my cornea transplant but the graft hadn’t taken so they’re leaving it a few more weeks.  The silly contact lenses keep coming out so the eye people have to keep coming back and upsetting me.  My eyes were getting really dry overnight so now I’m having drops every two hours overnight and now my eyes feel much better in the morning.

My stoma has still been being naughty and that’s what’s keeping me in hospital.  The doctors don’t really know why,  it’s not infection and it’s not rejection so they’re scratching their heads!  It could be one of my medicines so they’re going to stop that and see and if it’s not that then I’ll have to have another endoscopy.

I’m on PN for 20 hours a day so this means I can’t really leave the ward although me and Mummy managed to escape to Ronald Mcdonald House yesterday for two hours.  I was so happy to go in my pushchair and me and Mummy played on the bed and had cuddles. 

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I really want to go home now as I’m getting bored in hospital in my silly, small cubicle.  I’m getting much stronger and enjoying lots of playing and standing up with help.  It’s a bit hard as Mummy and Daddy have to move my cot every time I want to play on the floor, but I enjoy it.  I’m making lots of new noises too and like shouting at people when they come in!  Last week I got a drum so I like bashing that.   Heather, the lovely lady who cleans my room everyday got it for me as she knows I like bashing toys.

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Me and my drum!

In other news, a little girl who was on the ward sadly went to a hospice last weekend as her GVHD had flared so badly that there was nothing more the doctors could do for her and she lost her battle last week.  We had GVHD at the same time and the opthamologists said we had the worst GVHD eyes in the country so it’s very sad that she’s not managed to fight it.  Ella used to play with her brother and sister and they were a lovely family so we are thinking of them.

Well that’s it for now!  I’m off to rest,  ready for another day of playing!

Love

Oliver
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"Quick Mummy!"

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Stuck In A Rut

Hi everyone

It’s a while since I’ve done an update so I’ve given Oliver the week off.

I’d hoped this blog would be a bit more positive than the last, but sadly that’s not the case.  Over the past week Oliver’s stoma losses continued to stay high,  hovering around one litre a day, four times more than usual and the opthalmologists had hoped for better results by now too.

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Oliver having a post theatre snuggle

On Wednesday Oliver had an endoscopy and ileoscopy in the hope that further biopsies would explain the high losses but these were inconclusive and didn’t seem typical of rejection.   The dietician had tweaked his feed too in the hope that reducing the carbohydrates might help and Oliver also had a one off dose of IV steroids but these just made him stroppy and hungry.  Yep, hungry!  The only good thing to have come out of the last week is that Oliver’s shown an interest in food for the first time which has been a joy and something I thought I’d never see.

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Oliver getting messy with yoghurt

By the end of the week Oliver’s losses had been rising and Oliver had become increasingly unsettled with it.  He was so tired yet he seemed unable to sleep for more than ten minutes, he didn’t want to lie down,  and didn’t want to play.  11 hours of sitting in the semi dark in a tiny cubicle with a whiney boy every day is not much fun so by Saturday I was more than happy to see Paul! 

I decided after a lousy Christmas and a rough week of not being together we’d go out for a nice meal…I even washed my hair specially!  
After a few days at home on school run duty Paul was shocked to see how much weight Oliver had lost. Oliver went steadily downhill over the day, and although we managed an afternoon off the ward, Oliver was withdrawn and becoming dehydrated.   Suffice to say it ended up as a late takeaway of fish and chips on our one night together!

So that brings us up to date. We have no real idea of what’s wrong which is just as frustrating for the consultants.  It could be rejection or a viral infection,  but they can’t tell.  As of today Oliver’s feeds have been stopped and he’s started PN, the IV nutrition he had as a baby that kept him alive but also ruined his old liver!  It’s something we never thought we’d see again,  but then we never envisaged any of the past two years would happen and he can’t continue to lose weight.

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My boy and the dreaded pink PN bags

This Wednesday Oliver will be having his endoscopy and ileoscopy repeated which will hopefully show something and on Friday he’ll be in theatre again to have amniotic membrane on both eyes to try and help them heal quicker. 
Remaining hopeful and positive is something we’re both struggling with, especially when you see older children still struggling or sadly not making it.  All we want is to be back home to regain a sense of normality with our little family all together.

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Back on PICU

Hi everyone

Oliver’s asked me to do this week’s blog as he’s feeling a bit poorly.

After last week’s visit to Rotherham for ECP Oliver seemed to be doing well and we managed to wean his oxygen down last weekend.  We even managed to enjoy a few cuddles and Oliver was able to sit up and play for short spells.

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Enjoying a nice cuddle

During Sunday Oliver’s skin got progressively redder as the day went on and he spiked a temperature.  Overnight his skin blistered on his face and neck with new rash appearing on his leg and we knew his GVHD was back.

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Oliver being cheeky and trying to get his sats probe

On Tuesday Oliver went to theatre for a dressing change and also to have a new hemo-cath line as his was playing up but struggled with his breathing when he got back to the ward so was quickly assessed by PICU and taken back to PICU and put on a ventilator so we decided to make sure we were all together so Paul and Ella came over after school and Ella had 2 days at “hospital school”.

At the same time we were told by Dr Hartley that as Oliver’s GVHD was flaring up again we only had one more option for treatment and that was campath. 
We had been told about campath before and were very reluctant to let Oliver have it as it has a lot of nasty side effects but our main concern was that it would wipe Oliver’s immune system completely leaving him without any defence against infection.  When campath had been mentioned before we had other options with steroids and mesenchymal stem cells but as these had not had any real effect we decided campath was our last option to try and so on Wednesday Oliver had his first dose of campath.   Thankfully he did not develop any side effects and we expect him to have a further dose or two next week and hopefully this will stop the GVHD attacking his body until he can resume ECP.

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Back on PICU again

Oliver went back to theatre again on Friday to have his dressings changed and was also seen by the opthalmologist who was concerned that his left eye was deteriorating because of GVHD so he is now having ointment in both eyes every hour to try and help.  Oliver’s skin is now very sore and raw in several places so he’s sedated to keep him comfortable and also to keep him from trying to pull his ventilator tube!  We had hoped to get Oliver extubated this weekend but he’s needed more breathing support and we’re hoping he doesn’t have a chest infection.

It’s certainly been an eventful week.  Here’s hoping things improve soon.

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GVHD Hell

Hi everyone

Since my last blog my GVHD has got a lot worse and it’s really getting on my nerves.  It’s really painful and itchy and I’m now having IV pain relief to try and keep me comfortable.

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The blood tests I had confirmed it wasn’t chicken pox and the doctors gave me some high dose steroids to try and stop the GVHD but they didn’t work.   Dr Gupte has worked really hard to get me some mesenchymal stem cells from London and I was given these yesterday.  Nobody really understands how they help but they have been effective in reducing GVHD before so hopefully they will help me.

The doctors were worried I might be too poorly to have my ECP in Rotherham this week but it was agreed I could go, so me, Mummy and a nurse called Chris who has looked after me lots went up by ambulance.  I was so tired I slept all the way there and through my treatment.  We came back with the flashy lights and nee naas but I slept through it all.

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In the ambulance on the way to Rotherham

On Thursday morning my right eye blistered really badly and the ophthalmologist reviewed me yesterday and the bad news is that the GVHD has spread to my eyes and I have scarring on my right eye.  I’m now having steroid eyedrops every 2 hours to try and stop it developing further as it could affect my sight.

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My poorly eye

So we now have to wait and hope the stem  cells start to work and quick because my skin is getting worse every day and it’s not much fun😭

Lots of love

Oliver

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Birthday Boy!

Hello everybody!

Today is my first birthday! After lots of tough times I’ve finally reached my first birthday and even better, I’m spending it at home!  There’s lots of people who thought I wouldn’t make it, and without my transplant I might not have but I proved everyone wrong and made sure I got home!

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Last week it was my sisters 6th birthday and luckily it was a nice day so we took her out for a birthday tea.  I’m not allowed to go to busy places so we sat outside and Ella showed me the ducks!

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Celebrating my big sis' birthday

I’ve had a good couple of weeks at home now and have settled in really well. I enjoy going for walks and taking Ella to school and I LOVE my bedroom and having big sleeps!

I’m starting to find my voice and “ba ba ba” is my new noise…and I’ve said “da da” a couple of times so will soon be shouting for my Daddy!

I’ve had two check ups at clinic and everything is good.  Mummy had to take me to A&E last Friday as I got a big rash, but luckily the doctors decided Mummy and Daddy could look after me at home with some extra medicine.  I stayed up til 9.30 pm and was really pleased to be back home! 

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Having some tummy time!

Because it’s my birthday I have a special present to share with you all. I hope you enjoy it! http://youtu.be/jEIG3LLxYvs

Right,  I’m off to open some more presents and have a birthday snooze

Love

Oliver
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Taking It Steady

Hi everyone

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!

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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.

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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!

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Me turning my head the other way for a change!

That’s it for this week!

Speak to you soon

Oliver
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