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!"

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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

New Year, Still Here

Hi guys

Well I’m still here in Birmingham and have no idea when I’ll get to go home.

The good news is that Santa did visit but I was a very grumpy boy on Christmas Day from the steroids and didn’t even want to open my presents.  Luckily I started to cheer up the following day before Mummy phoned Santa to tell him to take my presents back.  I really hope I get to spend Christmas at home next year and so do the rest of my family! 

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Me being a Christmas day grump

I’ve had a good week though and was allowed to have a few afternoons over at Ronald Mcdonald House with Mummy, Daddy and Ella which was fun.  I also had some nice naps there as it’s nice and quiet (when Ella sshhes that is!).  My eyes are doing well and I’ve been opening them more and I try and reach everything I can see.

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Playing with my sis at Ronald Mcdonald House

I also had a big achievement and ate some banana! Mummy videoed it to show Daddy and the next day I had some more!  I’ve also tried some jelly and made Nanny cry a happy tear because she was so pleased!

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Look at me with my carrot!

Sadly my stoma losses are still high and the doctors don’t really know why! Yesterday I started a 3 day course of immunoglobulins to try and improve the immunity of my gut and on Wednesday I’m going to have an endoscopy. Hopefully the immunoglobulins will work or the endoscopy will explain why my losses are so high so I can get better and home. 

I’ve had enough of being here now and so have Mummy and Daddy.  Daddy and Ella have just gone home today because Ella has school tomorrow so it’s just me and Mummy now!  Mummy and Daddy surprised Ella and took her to see Jack and The Beanstalk at Birmingham Hippodrome on New Years Eve.  They all had a great time and Ella showed me her programme when she got back.  A big thank you to Birmingham Hippodrome for helping arrange tickets for us.

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Daddy and Ella at the panto

That’s all for now

Oliver
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1

Fighting Back

Hi guys

So after the drama of a cornea transplant I bounced back very quickly and was soon off oxygen.  Kevin one of the Ophthalmologists was really pleased with my eyes and was happy for me to go home for the weekend and then for Christmas too if they remained good….

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Doing clapping

On Saturday though my stoma output went crazy.   I usually have 250-300 mls out a day, on Saturday I had 1300 out so by Sunday I was very dehydrated.  Mummy,  Daddy and Ella arrived on Sunday morning expecting another good day but instead had to get the doctors to review me and I was quickly given some fluid boluses as my blood pressure was very low and I was struggling to breathe so needed oxygen.   It was a scary day for everybody and I nearly had to go back to PICU.

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Ella also got to meet Elsa!

I had lots of tests done and a stoma biopsy showed I have mild rejection so last night I had some super strength steroids to help.  Today I have either been angry or asleep!  It’s crazy that it’s rejection after I had GVHD which is the opposite type of rejection.  It must mean my body has decided to fight back…but maybe too much.

That’s us here for Christmas now.  Mummy bought the world’s smallest Christmas tree for their room at Ronald Mcdonald House and Ella put up some fairy lights. Mummy and Daddy have tried to make sure Ella has lots of fun too and on Saturday night they went out for a Chinese which Ella loved!

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Mummy and Ella enjoying dinner

I need to say thank you to Sainsbury’s and Nivea who have been very kind and donated some goodies for the ward and Ronald Mcdonald House.

I’ll try to behave now or Santa might not visit me.

Oliver
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1

Keeping A Close Eye

Hi everyone

After a good week last week and only needing a little bit of oxygen at night Daddy and Ella came up to see me last Friday after school.  I was really pleased to see them!

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My big sis seeing the Christmas bull!

On Saturday morning Mummy and Daddy found out I’d managed without oxygen so Dr Abel Hady said I could go home for the weekend! It was brilliant!  When I got home I had a lovely big sleep while Mummy,  Daddy and Ella made the house all Christmassy!  Then on Sunday Nanny and Grandad came round and Mummy cooked a big roast lamb dinner.  I just played on my mat though!

On Monday morning Daddy had to bring me back to BCH for my ECP.  The eye doctors had had another look at my eyes before the weekend and decided they weren’t improving quick enough and Mummy and Daddy agreed I should have an amniotic membrane on both my eyes on Tuesday.   This would act like a bandage and cover the scratches and help my eyes heal.

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All ready for theatre

On Tuesday I went to theatre but unfortunately Mr Paruleker found I had a big perforation in my right cornea so could only put the membrane on my left eye. He filled the hole in theatre but when the consultant checked my eye on Wednesday fluid was still leaking through into my eye and they decided I need a cornea transplant and fast or I would lose my eye.  Mummy and Daddy were really upset and Ella was too as this would probably mean I couldn’t be home for Christmas.
Luckily Professor Shah was in BCH yesterday who is a cornea expert and there was a spare cornea so at 6pm last night I went to theatre!  At the same time Mummy packed at home and Daddy came home and now I have Mummy, Daddy and Ella with me!  It means Ella’s missed two days of school but she doesn’t mind as she gets to join in the carol concert in the hospital chapel this afternoon.

In the meantime I’m having ECP and playing happily even though I look like a pirate!

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Ah me hearties!

That’s all for now. Whether I get home for Christmas remains to be seen but I’ll keep smiling.

Oliver
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0

Only A Trickle

Hi everyone

I’m back home…on good old Ward 8 at Birmingham anyway. 

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Yep I'm a Superman.... a lazy one

I finally got off the ventilator last Wednesday in Sheffield so that made it a bit easier to get back to BCH and last Thursday me and Daddy managed to get transferred. I was glad to get back and after a week with just Daddy I was really happy to see Mummy and Ella at the weekend.  Now its just me and Mummy so I’m getting a bit bored of her now and want to get home and see Daddy and silly Ella!

I’ve done well this week and quickly got off the oxygen,  but overnight I’ve been needing the tiniest trickle of oxygen and that’s what’s keeping me here!  Mummy keeps telling me to behave at night but each morning she’s found out I’ve had oxygen.

Today Tracy is coming down from Rotherham so I can have ECP which is good as I missed out last week because I was in Sheffield.  My skin looks good though and is almost completely better.

Being back at Birmingham means I can have my special blood serum eyedrops and I’ve been opening my eyes a bit more this week!  The opthalmologists have been to see me and there seems a tiny improvement.

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Me happy after having my anaesthetic eyedrops so the opthalmologists could examine my eyes

I really want to go home now and for us to be altogether again!  I really really don’t want to spend another Christmas in hospital and nor do Mummy, Daddy or Ella.

Love

Oliver
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2

Hospital Number 6

Hi everyone

I had a good weekend and on Monday night Mummy got to take me home.  I was so happy to be home and have cuddles with Ella and sleep in my own bed!

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Escaping from BCH

Being home was short lived though as on Thursday I was heading back to Rotherham for ECP but Mummy was hoping to be home by Friday lunchtime.

My ECP treatment went well on Thursday and I had good fun kicking toys in the cot and shouting which Tracey the nurse thought was funny! Then it was back to the Premier Inn with Mummy to watch Eastenders and have a cuddle before bed.

Overnight Mummy noticed I sounded a bit snotty and at 3am I had two aponeas (I stopped breathing) and Mummy had to call an ambulance and I went to Rotherham A&E and had oxygen.  In the morning I went up to the Children’s Assessment Unit where Nick looked after me. Rachel from Photopheresis came up too but I was too poorly for ECP but she stayed and helped look after me. I started getting very tired so an anaesthetist decided to give me some help and I was put on a ventilator.  So many people came to help me, and being up north they made sure Mummy had a cup of tea!

Rotherham doesn’t have an intensive care unit which is what I need and Birmingham Children’s didn’t have any beds free so the Embrace transport team have brought me to Sheffield Children’s Hospital which is where I am now. This is my 6th hospital so another set of doctors and nurses for Mummy and Daddy to meet!

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Here we go again...

I have had lots and lots of tests done but at the moment the doctors think I have developed bronchiolitis.  I had pesky bronchiolitis last Christmas which made me poorly but because my immune system is very weak I can’t fight it now. I’m still on a ventilator and sedated but the doctors have weaned it down a little bit.

Hopefully I’ll get to Birmingham Children’s Hospital soon once a bed is free and then I have to get better and get home because Ella is waiting to put the Christmas tree up.

Lots of love

Oliver
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