Out of my mind with worry part 2

[YourRubyMaker]

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

I'm so sorry you've got the worry about the holiday on top of everything else.

I can maybe help with the holiday.
My DD unfortunately has also had tumours (one brain and one abdominal over the course of a few years). Last summer TUI gave us a full refund when we couldn't travel. They asked me if I had insurance and if I I had had insurance they wanted me to go through that but when I said I didn't they refunded the whole lot.
You need to email [email protected] and provide a letter from his consultant. We were due to travel within a couple of weeks so it really was quite a last minute cancellation.

DD's head also swelled up a lot on around the 3rd or 4th day. It was awful as we weren't expecting it.

Could you swap with dad at night? So you spend the day with your son and then go back to sleep at the Ronald Macdonald House. That was a common set up in the ward we were in. (Kings).

Thank you for this , I can ask tomorrow when the doctors come around for some kind of letter , did you just say you needed it to prove he was ill to cancel your holiday or was it for something else too ?

I explained about the holiday and her consultant was happy to do it.
They'll be used to it. The last thing you need is money worries on top of all the stress.

Hope you get somewhere x

We also had to cancel a holiday when DD had her illness. The specialist nurse at the hospital wrote a letter and we sent off pictures of it to the airline and the insurance company we used. We’d insured our flights through the airline and they refunded straightaway. The insurance company took a bit longer but they also paid out for other elements. I’d have thought TUI would want to be helpful though since they specialise in family holidays. The email a PP posted looks useful, I’d try that.

The letter said something like ‘dd has been diagnosed with x and can no longer travel for medical reasons. It was impossible for the family to know this would happen.’ But it was totally a letter she wrote often.

Out of interest, is the swelling a pseudomeningicle by any chance? If so my daughter had that very badly.

(It's where brain fluid leaks into the back of the head producing swelling)

Hi @YourRubyMaker
Glad to hear your update this evening.. and hope your boy continues to feel better x

on the Tui front - obviously to cancel on the email address someone posted and with the letter from your consultant and I’m sure it will be successful.
but as a fall back, my brother was able to post-phone his Tui holiday when he was unable to travel. He just kicked into the following year. They were very accommodating.

if all else fails - tagging them on Twitter is usually v effective with an outline of your problem. They should immediately give you a further contact detail of someone with authority to sort it out. 🙏

Hope you get some sleep x

Wow this is unfairly suspicious and nasty. What are you implying?

If you have an issue, report it. It’s lower than low to post like this on a thread about a very ill child. If you need to feel clever, find a way that’s not at someone else’s expense.

Will be thinking of you today and hoping the biopsy brings reassuring news OP

Thinking of you today hope the results are positive x

I'm so sorry that you've still got so many worries and not enough answers right now. Hope your lad turns a corner soon

Thinking of you today ❤️

I hope you get the TUI refund sorted. They should hang their heads in shame if they don’t refund you with 3 months notice, when you need the money so badly when not working to be with your child. I’m sure they can easily resell it at this point, so won’t incur a loss.

Lots of thoughts with you all today.

If you can't get a refund for your holiday, maybe you could reschedule for next year to give you some breathing space?

You won’t need proof if you explain what’s happened, there are certain circumstances they ask for it and others they don’t. It’s exceptions@TUI now too.

Sending love and thoughts today

Hope the results are as positive as they be and you get a plan going forward. I’m sure the consultant will write a letter for Tui. They really ought to show some compassion but if it’s difficult and causing more unnecessary stress, perhaps ask about how far in the future you can push it back.

🌺

❤️

Sending you lots of love and strength for today.

Thinking of you and your dear son. Hope and pray, you get some positive news today to go forward. Sending strength and good wishes. 😘🩵

I’m also thinking of you and your son OP. You’re both in everyone’s thoughts by the looks of it

Thinking of you today, OP.

Thinking of you both today and hoping that you get positive news from the biopsy. Sending you love 💕