40

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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0

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!"

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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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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My Longest Stay In PICU

Hi everybody

I’m still in PICU, my longest stay…even after I had my transplant! 

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Managing a little play with my eyes closed

The good news is that my skin is healing up well after my last flare up.  I just had one dose of campath and luckily that seemed to be enough to fight off those nasty donor cells!  My eyes are much the same and the opthalmologists are checking my eyes regularly.

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Me a week ago

On Friday Rachael from Rotherham came to see me and I got the first ever ECP treatment at Birmingham Children’s!  Rachael got a bit of a shock seeing me on a ventilator but I gave her finger a squeeze to let her know I knew she was there!  Today Maggie has come down to give me ECP and then I’ll be having more on Friday too!
I’ve also had another dose of stem cells as these help when there’s inflammation and yesterday I came back from theatre with even less dressings!

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I'm slowly getting rid of my bandages and I'm getting long legs like Daddy

The doctors have been a little bit worried about my chest but thankfully I haven’t developed any infections.  Hopefully I won’t need too many more trips to theatre to have my dressings changed and then I can get off the silly ventilator.  Mummy and Daddy haven’t been able to give me cuddles for over 2 weeks now so I’m looking forward to being well enough to come out for a cuddle!

In other news Oleg got GVHD too but Ella the nurse has bandaged him up like me!

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Me and Oleg!

That’s all for now, I’m going to carry on snoozing!

Lots of love

Oliver
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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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4 Weeks At BCH

Hi everyone

Well, I’ve been here almost a month now and I have no idea when I might be able to go home.

My GVHD seems to be under control thanks to three lots of mesenchymal stem cells but my skin is healing very slowly so I’m still needing pain relief and oxygen.   I’m on a lot less than I was though and hopefully in the next week I can manage without.

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Managing a rare smile

As I have been so poorly I couldn’t get to Rotherham for ECP and Birmingham don’t do it.  Yesterday though me, Daddy and Monica the nurse went for a day trip to Rotherham via ambulance and providing I stay well I’ll be able to go twice next week.  It would be a lot easier if Birmingham Children’s did ECP and Mummy emailed the CEO of the hospital this week and the big bosses are now talking about it, so hopefully it’ll be soon!  ECP is the only thing that’s going to cure my GVHD so it’s really important I get it.

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On my way to Rotherham

I’ve seen the opthalmologist quite a few times because my eyes are really sore and dry.  He thinks the GVHD is being controlled and I have loads of ointments and drops but they’re still too sore to open most of the time, so I just do lots of sleeping as I can’t really play!

I do have some good news though, and that’s that last week I managed to get upto full feeds via my NG tube so I finally got rid of my NJ.  Mummy and Daddy were so pleased as they used to worry I’d pull it out at home.

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What a sorry state I am!

Ella went back to school on Thursday so Mummy and Daddy are having to take it in turns with one of them with me and the other at home with Ella.   It’s rubbish and I want us to all be together!

Hopefully I’ll be looking a bit better next time I do my blog.

Lots of love

Oliver
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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