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Getting Nowhere

Hi guys

Another couple of weeks have passed and I’m still here and there’s been no real changes. 

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I need a haircut!

My stoma output is still high which is restricting how much feed I can have.   Last weekend Mummy and Daddy had a scare as my stoma output had a lot of blood in and I also had blood out of my redundant bottom.  I had an endoscopy and ileoscopy on Monday which showed I have colitis,  which is inflammation of my original bowel so I’m having steroids.   Everyone was worried it was internal GVHD as my skin was going red at the same time,  but thankfully it’s not!
My skin had started flaring again but I had one day of ECP (my line was being naughty so I missed a day) and steroid cream and it’s now looking OK.

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The opthalmologists had been pleased that my eyes were stable but this weekend they’ve got more sore and so Mummy is going to have a chat with them.   I’m still having hourly eyedrops and with talk of me going home Mummy and Daddy need a plan as they can’t be getting up in the night to do my eyes and I’m getting pretty cheesed off with being faffed with all the time.  I’m the only child in the UK with eyes so bad from GVHD so the opthalmologists are speaking to the Sick Kids Hospital in Canada for advice!

I had a good start to the week but have been a bit grumpy for the past few days.  I also went to theatre again on Friday and now have a new broviac line for my PN. Mummy and Daddy have started PN training again so hopefully they’ll soon be flushing my line and putting my PN up so they’ll be ready to do it at home!  Today Mummy flushed my line and put my PN up for the first time.

Ella is also becoming a very good nurse! She’s been too busy playing with her friend Madiee to come and play with me, so I have to shout at her when she comes in the room. Her dolly now has an NG tube and a stoma bag!

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Ella and her brave friend Madiee

It was also Mummy’s birthday so Daddy and Claire the play worker helped me to make her a card and decorate my room for her.  Daddy tried to make sure Mummy had a good day even though we’re in hospital.  Mummy and Daddy don’t seem to have many friends left, because of me I think, but the ward got Mummy a card and present and that made her happy and Nanny and Grandad got Mummy a nice present and looked after Ella so Mummy and Daddy got to go for dinner. 

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That’s it for this week!

Love

Oliver
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1

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!"

6

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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0

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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2

New Year, New Hope

Hi everyone

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.
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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. 
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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.

Fran
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My awesome family on Christmas Day

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Bye Bye Stoma

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Hi 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.

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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

Oliver
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2

Bedding In

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Me and my nee naa vest (my Daddy drives one of them!)

Hi everybody

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!

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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.

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Look! That's me!

That’s all for now!

Oliver
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