Craniosynostosis
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Re: Craniosynostosis
Cheers all, he's been sat up and managed to eat an adult sized portion of a hospital shepherds pie earlier (I'm not sure I could match such a feat). I've just left him sleeping and let his mum take over for a bit. I'll try and post a proper update later.
What I forgot when posting earlier was to mention Ronald McDonald House(McDonald's charity). We've been staying there since Monday as a family. It's an absolutely fantastic facility with amazing staff. For those of you that aren't aware they have what is they have "houses" at 11 or 12 different hospital sites. When I say house, it's more like a hotel. They put families up for free so that they can be closer to their sick children whilst they're in hospital.
They provide a clean room with an ensuite bathroom with communal lounges and cooking facilities, along with laundry rooms. Here at John Radcliffe they've got around 50 rooms on 3 floors with two lounge areas in each floor both with 2 kitchens, sofas and a TV. You get an allocated space in a freezer, fridge, and a food cupboard.
Add onto that they have a lovely garden area with things for children to play with.
Staying at RMH has made a huge difference to us whilst we've had Hamish at the hospital here and I really can't over-egg how amazing it is.
What I forgot when posting earlier was to mention Ronald McDonald House(McDonald's charity). We've been staying there since Monday as a family. It's an absolutely fantastic facility with amazing staff. For those of you that aren't aware they have what is they have "houses" at 11 or 12 different hospital sites. When I say house, it's more like a hotel. They put families up for free so that they can be closer to their sick children whilst they're in hospital.
They provide a clean room with an ensuite bathroom with communal lounges and cooking facilities, along with laundry rooms. Here at John Radcliffe they've got around 50 rooms on 3 floors with two lounge areas in each floor both with 2 kitchens, sofas and a TV. You get an allocated space in a freezer, fridge, and a food cupboard.
Add onto that they have a lovely garden area with things for children to play with.
Staying at RMH has made a huge difference to us whilst we've had Hamish at the hospital here and I really can't over-egg how amazing it is.
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Re: Craniosynostosis
Blimey…that’s some serious surgery! Hope the little chap has a quick recovery. He will have some impressive scars to impress the girls with though
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- Thegreyman
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Re: Craniosynostosis
It sounds like you have all had a tough time but great news that the surgery went well.
Wishing your wee lad all the best for his recovery.
Wishing your wee lad all the best for his recovery.
Patrick
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- magicman
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Re: Craniosynostosis
Well I never expected to come on the forum today and shed a few tears.
Thanks for sharing Hamish's story and how things have progressed.
The McDonald's house looks fantastic, I've contributed quite a bit to Ronald's fund over the years and I've got the belly to prove it.
I remember when my daughter went in for reconstructive surgery, how worried we all were, so I can appreciate how relieved you must feel, with how well the surgery went.
All the best to you and the family.
Regards Steve
Thanks for sharing Hamish's story and how things have progressed.
The McDonald's house looks fantastic, I've contributed quite a bit to Ronald's fund over the years and I've got the belly to prove it.
I remember when my daughter went in for reconstructive surgery, how worried we all were, so I can appreciate how relieved you must feel, with how well the surgery went.
All the best to you and the family.
Regards Steve
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Re: Craniosynostosis
That looks a major procedure that he’s gone through. However it never ceases to amaze me how these medical procedures are sometimes all in a normal days work for those who carry them out. I assume the John Radcliffe hospital in Oxford is a specialist in this field and paediatrics in general? This would explain why they will have those facilities for the families on site and he will be in the best place possible to receive the best care.
I’m sure Hamish will grow up with nothing more than the scar on his scalp to show for this and he won’t remember much about it as he grows up. My daughter had several rounds of ear surgery is her early years and doesn’t remember them. It’s not affected her one bit.
I’m sure Hamish will grow up with nothing more than the scar on his scalp to show for this and he won’t remember much about it as he grows up. My daughter had several rounds of ear surgery is her early years and doesn’t remember them. It’s not affected her one bit.
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Re: Craniosynostosis
Best wishes! Thanks for sharing! And your son is a total badass!! What a tough guy
I know any of my fellow Marines here would say the same.....I salute that little tough guy!
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I know any of my fellow Marines here would say the same.....I salute that little tough guy!
Sent from my SM-N986U using Tapatalk
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Re: Craniosynostosis
^^^^JR is one of 5 UK "supercentres" that deal with Craniosynostosis. The cranio team is amazing and because of them everywhere they go in the hospital is well on it in terms of how they do things. As for RMH, it's used well by cranio families but even at JR the norm is only 2 surgeries per week so it's a much more widely used facility. I have a friend who stayed there a few years ago after his kid had huge seizures.
All said, they certainly always offer a bed to cranio families as long as there's space. We had nothing to do with organising this though as the JR cranio team just do it for you. The impact of RMH for cranio families is so great though, that even the cranio charities (Headlines and Cranio Ribbons) are raising money for them!
All said, they certainly always offer a bed to cranio families as long as there's space. We had nothing to do with organising this though as the JR cranio team just do it for you. The impact of RMH for cranio families is so great though, that even the cranio charities (Headlines and Cranio Ribbons) are raising money for them!
Re: Craniosynostosis
Takes a brave and loving parent to share a post like this. Wishing your little boy a speedy recovery.
Richard
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Re: Craniosynostosis
What a little trooper. All the best to all of you.
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- welshlad
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Re: Craniosynostosis
Just catching up on this now. What a fantastic, uplifting post/thread. The things surgeons can do sometimes is just so impressive. And massive kudos to the RMH charity, what a great facility that is.
Best wishes to you, Hamish and the rest of your family as he continues his recovery.
Best wishes to you, Hamish and the rest of your family as he continues his recovery.
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Re: Craniosynostosis
I've been putting off reading this thread until now, as I was in trepidation as to the condition and outcome for Hamish (from the photo that came up in pre-view on Tapatalk).
I needn't have worried as its a wonderful story with, so far, a fantastically positive outcome.
So brave of everybody involved, wee Hamish for going through the procedure (probably not really comprehending what it is all about) and you and your family for seeing him through. You mention Hamish being 'My youngest'; it must be a difficult, strange and potentially frightening time for his older siblings.
Sincere best wishes for all of you, and we all no doubt look forward to news of wee Hamish being allowed home.
Guy
I needn't have worried as its a wonderful story with, so far, a fantastically positive outcome.
So brave of everybody involved, wee Hamish for going through the procedure (probably not really comprehending what it is all about) and you and your family for seeing him through. You mention Hamish being 'My youngest'; it must be a difficult, strange and potentially frightening time for his older siblings.
Sincere best wishes for all of you, and we all no doubt look forward to news of wee Hamish being allowed home.
Guy
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- ajax87
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Re: Craniosynostosis
As a father of a 19 month old myself, this really hit home.
I’m sure in time the little one will fully appreciate the gravity of it all and appreciate you being there for him.
Best wishes for all of you, and a speedy recovery for Hamish!
I’m sure in time the little one will fully appreciate the gravity of it all and appreciate you being there for him.
Best wishes for all of you, and a speedy recovery for Hamish!
Alex
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Re: Craniosynostosis
What an amazingly overwhelming response folks. I'm also delighted that this has been taken as intended. It's been a strange journey because we've known he's needed this surgery since he was a day old thanks to a very on the ball peadiatrition at Wexham Park hospital in Slough. Whilst it's hung over us he's never been ill and it's never effected him in anything he's done. His development has been as you would expect for a child his age. We've always played down the gravity of the surgery, probably because we've had so long to get used to it and we're not drama queens. It's strange how it slaps you in the face and you get a huge emotional overload when it comes to it though. I won't pretend I didn't cry a river from Wednesday night through to Thursday afternoon before his surgery.
He's had a decent couple of days. He was sat up eating the day after surgery and he's been up walking around today.
He was very content last night before bed.
I was met by the polar opposite this morning though. A very irritable little chap who'd been poked and prodded most of the night due to a low and irregular heartbeat. Didn't want anything or anything on him, not even a vest. You can't miss the ECG stickers, of which there were 12 all wired up for some time I believe. The heart "issue" was just down to the anaesthetic from his surgery I think (and hope).
As the today progressed he started losing cables and tubes and only has a 3 way cannula in his groin left. Much to my relief the dreaded drainage tubes have been removed and he no longer has two bags of blood at the bottom of his bed that had to follow him everywhere.
This time two days ago he resembled the inside of C3P0.
Nasty things:
The caveat being that he's now rocking this bandage which is pretty much just there to soak up the leaky wounds from where the drainage pipes were. The counter effect of this being that plenty of these fluids will be left inside. This will increase the swelling and will be particularly noticable around his eyes, which he might not even be able to open for a period of time. His left eye is already struggling with this.
His big brother is almost 7 and struggled when we left him last week with his grandparents. He's improved emotionally over the week and his school teachers have been really helpful. The cranio team here at JR have everything covered and we've had a psychologist (Sam) at our disposal for over a year now. He's there for the whole family and will be at Hamish's disposal for as long as he wishes throughout his life. Sam wrote a letter for Hamish's big brother to help him understand the current situation and has made it clear he can come with us to the hospital next time for a chat. It'll be a very sad day if we lose the NHS.
He's had a decent couple of days. He was sat up eating the day after surgery and he's been up walking around today.
He was very content last night before bed.
I was met by the polar opposite this morning though. A very irritable little chap who'd been poked and prodded most of the night due to a low and irregular heartbeat. Didn't want anything or anything on him, not even a vest. You can't miss the ECG stickers, of which there were 12 all wired up for some time I believe. The heart "issue" was just down to the anaesthetic from his surgery I think (and hope).
As the today progressed he started losing cables and tubes and only has a 3 way cannula in his groin left. Much to my relief the dreaded drainage tubes have been removed and he no longer has two bags of blood at the bottom of his bed that had to follow him everywhere.
This time two days ago he resembled the inside of C3P0.
Nasty things:
The caveat being that he's now rocking this bandage which is pretty much just there to soak up the leaky wounds from where the drainage pipes were. The counter effect of this being that plenty of these fluids will be left inside. This will increase the swelling and will be particularly noticable around his eyes, which he might not even be able to open for a period of time. His left eye is already struggling with this.
His big brother is almost 7 and struggled when we left him last week with his grandparents. He's improved emotionally over the week and his school teachers have been really helpful. The cranio team here at JR have everything covered and we've had a psychologist (Sam) at our disposal for over a year now. He's there for the whole family and will be at Hamish's disposal for as long as he wishes throughout his life. Sam wrote a letter for Hamish's big brother to help him understand the current situation and has made it clear he can come with us to the hospital next time for a chat. It'll be a very sad day if we lose the NHS.
Re: Craniosynostosis
That lad is officially a legend for handling that. Nothing short of a legend. If he has the arse a bit one day, hes allowed I recon..!
Your handle on the situation shouldnt be overlooked though either pal. To deal with a situation like this and hold it all together (or together as you can be!) Is a testiment to your family unit bud.
Absolutely top news.
Your handle on the situation shouldnt be overlooked though either pal. To deal with a situation like this and hold it all together (or together as you can be!) Is a testiment to your family unit bud.
Absolutely top news.