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The End of An Era

Never did I think a week ago that I’d be writing this today. Last Saturday we managed to get Oliver out of his cot for a play before he resumed sleeping. But not anymore as after 21 months of fighting Oliver decided enough was enough.

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Just a week ago

The last six months have been so hard seeing our beautiful boy become so poorly but bravely solider on. 
We have always been realistic about Oliver and over the past six months in particular have had to face the reality of losing him more than once. Seeing Oliver’s eyesight deteriorate was one of the hardest things and we were increasingly concerned about his quality of life and what impact all the procedures were having on him.
Last week we met with Jane Hartley, Oliver’s consultant, and she told us that she wasn’t sure Oliver’s bowel was going to recover and we were all in agreement that Oliver had been through too much and we wouldn’t put him through any more major procedures. We also raised concerns about Oliver increasingly zoning out and struggling to focus and so Oliver had two scans on his brain.

On Monday afternoon we met with Patrick McKiernan who was consultant for the week and he sadly told us that the scans showed Oliver’s brain was slowing right down and that nothing more could be done. Within less than a week we had gone from knowing we’d lose Oliver at some point to we were going to lose Oliver imminently. 

We had spent the best part of 16 months at Birmingham Children’s Hospital and Oliver always managed to win the hearts of everyone he met and this week has shown what a loved little boy he was. On Tuesday and Wednesday Oliver had a steady stream of visitors all day with everyone telling their stories of Oliver and how cheeky he was, especially at night when he’d want to play, and of course his little chuckle.

People are so quick to criticise the NHS but we cannot fault them for all they have done for Oliver.  This week has shown how amazing both the NHS and the people that make it are. The Palliative Care Team quickly got involved and they and the Pain Team ensured Oliver had the best possible care and that he was as comfortable as possible. The staff of Ward 8 have been absolutely incredible, providing as much tea as we could drink and the best support. It’s easy to think nurses become immune to seeing children so poorly and not make it, but seeing the nurses so upset will always be something we remember as we realised how much a part of Ward 8 Oliver had become.

On Wednesday the nurses arranged to have a full size bed put into Oliver’s room instead of his cot and this meant we could both lie with him and cuddle him until he left us in the early hours of Thursday morning.

On Thursday we visited Oliver where he looked so angelic in the new babygro we’d left out for him, tucked up with Gruffalo.  We then said our final goodbyes on the ward before packing up and heading home for the final time.

Today was a bittersweet day as Oliver’s Nanny completed her 100ft abseil down Fort Dunlop to raise money for Ward 8.  Oliver passing away made her even more determined and we are incredibly proud of her!  If you would like to donate please visit https://www.justgiving.com/veronicasoar/

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We’re not quite sure what we did before Oliver or what we do now but I know we’ll get through it as I have the best husband, daughter and in laws who came every week.  I’d like to say that we had the support of our friends and that we had lots of visitors,  but that wasn’t the case and this whole experience has shown who our true friends are.  However it has shown how strong we are and what an awesome threesome we are.

Sleep tight Ojlet
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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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0

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!"

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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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As Predicted…

Hi guys

Well you guessed right, I’m back at BCH.

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I love my Daddy so much I decided to eat his nose!

Last Sunday I had a bit of a rubbish night and spiked a high temperature so Daddy ended up bringing me in on Monday night once a bed was free.   The doctors were great, well they were nasty actually and put a cannula in my foot,  but they started antibiotics straight away and did blood tests and took swabs.  My oxygen saturation wasn’t great either so I had oxygen for a couple of days.

My face has been a real mess, hence the lack of photos this week. My face started scabbing and because I fidget alot this meant my face kept bleeding. I have new steroid cream though and it’s starting to improve.

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Scabby but smiling

Dr Hartley thinks this flare is from a virus… and I’ve not been anywhere so I’m going to be completely housebound when I get home!  Mummy and Daddy will have to be super strict with visitors too and hope Ella doesn’t bring any bugs back from school.

This week I also got my special blood serum eyedrops and I started these yesterday so hopefully these will magically make my eyes better. Apparently I’m the first person at BCH to have these and I know the doctors had to work hard to get me them!

After spending the week with Daddy,  Mummy and Ella came over on Friday night and on Saturday I was allowed out to Ronald Mcdonald House so I had lots of fun playing and being silly! On Saturday night once I was tucked up on Ward 8 Mummy, Daddy and Ella went to the German Christmas Market and for dinner. Once I’m home we won’t be able to go and do things as a family because of the risk of infection, so I didn’t mind them going out with me. I’m not allowed mulled wine anyway!  Today Nanny and Grandad came to see me and me and Nanny had big cuddles over at Ronald Mcdonald House.

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Mummy, Daddy and Ella having a night out together

That’s it for now and hopefully by my next update I’ll be back at home and getting ready for Christmas!

Lots of love

Oliver
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Another Flare

Hi guys

Well, I had hoped I was home to stay but my GVHD seems to have other ideas. I started getting a bit of a cough and cold a couple of weeks ago and that seems to have caused my GVHD to flare again as about a week ago my face started getting red and it’s breaking down now.  I have a couple of new patches on my body too.

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My poor sore face

Daddy took me to Rotherham for ECP last week and Dr Alfred had been hoping to reduce my steroids,  but instead I’m now on 10mg everyday to try and get the GVHD to back off.  As a result I’ve only had one happy day which Mummy, Daddy and Ella loved….but since that I’ve been pretty miserable and sleeping lots.  My cough keeps waking me up at night though so Mummy and Daddy are getting very tired!  I’ve sicked quite a few NG tubes out too and decorated both Mummy and Daddy, oh and Ella too! I like to spread the love!

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Me and Dadda

My eyes are much the same but behind the scenes at Birmingham Children’s Hospital the opthalmologists are arranging for me to have some eye drops made from filtered blood which will hopefully help and I should get these soon. I’m going back to BCH on Friday too so the opthalmologist can have a look at my eyes when I’m asleep and he might block my tear ducts to help my eyes keep moisture.

Mummy and Daddy are watching me like a hawk and Mummy and Dr Hartley have been speaking and emailing lots about me.  I want to stay at home but if my skin gets worse I’ll have to go back and that might mean spending another Christmas in hospital and that’s not what me or my sister want.

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Me and my lovely sister

I need to go have a nap now.

Love

Oliver
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