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Children's health

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Original poster

Out of my mind with worry part 2

374 replies

YourRubyMaker · 07/03/2025 14:51

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

OP posts:

Are your children’s vaccines up to date?

Set a reminder

Changed18 · 08/03/2025 21:08

Lovely that you managed to get time out of the hospital and with your toddler, OP. Hope you get good news on Monday. I’ll be thinking of you.

Gagaandgag · 08/03/2025 21:39

How has he been op?

JustMyView13 · 08/03/2025 21:43

Haven’t stopped thinking about you all week OP. Thank you for sharing an update, and sending lots of love & strength. He’s so lucky to have you in his corner watching over him and advocating for him xx

Bleachbum · 08/03/2025 21:47

Oh OP, I feel for you so much.

Re the swelling, not the same but my DH had a head injury and had to have surgery after. We were told that the post op swelling will not reduce completely for quite some time, could be up to 6 months they said. We were so shocked but they said it was a completely normal reaction for the body trying to protect itself after invasive surgery.

So easy to say yet so hard to do but try not to overthink or worry yourself sick. Take each hour at a time x

ThatsNotMyTeen · 08/03/2025 22:04

Been thinking of you and your lovely brave boy all week x

icanatilldancetowhigfield · 08/03/2025 22:11

You are keeping on keeping on. That is amazing! This is the hardest time of your life OP and you are wading through it. Keep going. You are holding your boy up. Feel proud while feeling exhausted. We are all in awe of you and sending you every support.

Decapitatedsausage · 08/03/2025 22:20

I’ve been thinking of you and your boy all week so glad to have seen your update. You are being amazing to keep going like this, I’m so glad you managed a few hours out today x

allthemiddlechildrenoftheworld · 09/03/2025 05:36

@YourRubyMaker have your parents or his parents managed to get on a train to help you out with your toddler? 100 miles is not too far on a train for your parents to come surely? I think both you and your dh should be together when they give you the biopsy results.

Horses7 · 09/03/2025 06:04

You are a brilliant Mum and very brave too. So sorry you’re having such an awful time, hope your son gets all the treatment he needs and is well again soon.

Truetoself · 09/03/2025 06:11

I was on the lookout for your new thread. So pleased your DS got through the surgery. Hope it's not too ling before you get some answers. Please look after yourself. This is the time to ask friends for help. Most will be pleased they can do something to help you

EdithBond · 09/03/2025 07:04

So pleased you got some respite from the ward and some time with your little one. It sounds hellish. I was in with my son for 2 weeks 24/7 and it was a lot.

I really would have a word with the ward manager about needing some quiet when your son’s had brain surgery and you don’t even have his prognosis yet. It does seem insensitive you’re in such a busy ward with kids that’ve had routine procedures, when he and you have had such a traumatic week.

At least he hasn’t needed an emergency op for the swelling, which is a relief. I hope it’s just his body recovering.

You’re in my thoughts every day xx

JasmineJasmine74 · 09/03/2025 09:25

Take one day at a time, @YourRubyMaker - even hour by hour. Thinking of you and your boy x

thistlepiedpiper · 09/03/2025 13:58

Have been on watch for your next thread, been thinking about you and your boy a lot since you first posted. Sending positive energy to you all. I'm so sorry this is such a tough time xxx

lizzielizard · 09/03/2025 16:03

There hasn't been a day since I read the first post when I haven't thought about you and your son (and DH and toddler) so I'm very glad to have discovered this thread. My thoughts and prayers to any god that will listen remain with you.

Original poster

YourRubyMaker · 09/03/2025 18:03

Swelling is still really bad and really increases in the day but he seems a bit better in himself today which is good as he was so down yesterday , also completely unrelated but more added stress … but we have a holiday booked with tui for June which we obviously can’t go on now , tui want £600 on top of what we’ve paid to cancel it !! Does anyone have any advice ? It’s just added stress and also more lost money in a time we both can’t work .

OP posts:

Original poster

YourRubyMaker · 09/03/2025 18:03

Thanks for your kind thoughts and support

OP posts:

MyrtleLion · 09/03/2025 18:09

YourRubyMaker · 09/03/2025 18:03

I'm so sorry that this is adding more stress.

Do you have holiday insurance? This is the exact situation it's for. Check your company, bank and credit card provider as well as sometimes you have holiday insurance from them.

If you don't have insurance, write to customer service. Explain what's happened and ask them to reconsider. Ask if you can rebook for a later date. They can resell your holiday very easily. Write to ABTA and the TUI CEO if necessary.

If that fails, then see if any of your friends want your holiday and sell it to them because changing name is cheaper than cancelling.

Greybeardy · 09/03/2025 18:32

YourRubyMaker · 09/03/2025 18:03

Re the Tui dilemma, I might be tempted to use social media to 'persuade' them of the insensitivity of their cancellation policy.

allthemiddlechildrenoftheworld · 09/03/2025 18:44

@YourRubyMaker holiday insurance??? if not, I would be tempted to let it go and see if they will sing for it

PoopingAllTheWay · 09/03/2025 18:46

Have either of you got holiday insurance with ur banks? That you may not of been aware of?

Cattery · 09/03/2025 18:50

Hi OP. Would it be possible for your son’s consultant to write a letter regarding your situation that you can forward to TUI?

ThisFluentBiscuit · 09/03/2025 18:51

Sending hugs and support! Things will get better. He's only just had this massive surgery. He will heal from it xxxx

Original poster

YourRubyMaker · 09/03/2025 18:51

So we have insurance but the excess is £400 and they are being very difficult and we need it sorted in the next few days as it then goes below 70 days and then we would have to pay even more , they also want us to pay it all then go to them but I think there gonna find a way not to pay I can tell

OP posts:

SuffolkUnicorn · 09/03/2025 18:57

OP I remember your first thread about your son I’m sending you a hug if you are in Suffolk I’m more than happy to drop things off if you need them xx

ranoutofquinoaandprosecco · 09/03/2025 18:59

Sorry to hear about your DS.

On the travel note have they asked for a doctors note for the instance, we did this when I was diagnosed with cancer in the July and due to travel in the August. I'm sure we managed to get a full refund with that.

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