Called back to consultant after DS brain MRI continued

[nearlymumof5]

Hello everyone, I’ve started another thread which continues on from this one

www.mumsnet.com/talk/childrens_health/4574553-called-back-to-consultant-after-ds-brain-mri?page=1

im blown away by you all, with your support and encouragement. Your messages really have been comforting and a distraction, I’m so grateful.

family background - I don’t have 6 children to run around with at home 🤣 I have three adult children with 2 at uni, and one a mummy herself. My youngest three are 13, 7 and 2. My 20 year old daughter who’s back from uni is staying with my parents and looking after her little brothers while we are here. Once things have settled with DS with pain we will bring them over and they can stay in Ronald McDonald with us.

Also please please, if you’re in McDonalds, please round up. This helps pay towards the amazing house we get to stay in which has been a god send. I can’t wait to start fundraising for these amazing people when this is all over xx

Love & best wishes to your amazing son & all your family x

wigglyt.org.uk link

www.wigglyt.org.uk

Best of news! You've got this OP and your DS sounds just brilliant. Hope all goes well and do keep us updated if you don't mind.

Thank you for your lovely updates
I'm delighted you have been accepted for proton beam treatment
He is coping so well, and it's touching to read of his sports day appearance
Sending love and strength to you all

Hurray! What a great update! Well done all of you. Both your update and the following replies are fabulous. It’s reassuring that sometimes in the worst of times, people can be at their best.
Your DS sounds a real trooper and I am very impressed by you getting the house organised when you must be exhausted.
We’re all here cheering you all on 💃🏼⭐️💐❤️

What a fab update!! So pleased for you all. Thank you for updating :)

Oh wow.

From such shocking news to finally some positive news (iyswim?!).

I'm so glad his school included him in sports day. Kids remember those things more than all the bad.

Hope you're looking after yourself too?

Fabulous news!! 💐

You, your ds and his school all sound incredible.

Having a plan for the next step must be reassuring and terrifying in equal measures but with such an amazing team around him I’m sure your ds will take it in his stride.

still sending you all love xx

Lovely positive update. Love and best wishes going forward xx

Hoping Treatment goes well and that your DS is feeling comfortable and well at the moment. So sorry you lost your FIL. What a rough time ye are going through.

Keep eating as well as you can (if people offer help consider asking for a nutritious meal)
Take multivitamins
Try to sleep
Deep breaths several times a day

🌻

Wow.what a whirlwind you've been on. But I'm actually glad for that.its all happening quick smart.quickly treated.
I no blitzing might be some relief to do,a practical job.but please if it's anything but that get someone else to do it.ftiends family etc.this is exactly what we are here for.ive done it often for friends.as it's the last thing you should need to think of getting done.
Especially if you should be resting first!

Really glad you got some positive news and treatment is starting soon x

I hope things are going ok and he is coping with the Hickman line. Glad to hear about the protons, I don't know much about UCLH but the Christie has videos for children online about how it all works, the assessment day/s can be quite tiring but once you start the therapy it goes really quickly. My DC was tired but still had energy to do things like cinema, bowling etc so hopefully he will have some good times too.

Hi everyone, we were having such a lovely time at home and away from hospitals that I didn’t have anything to update. We were due to start proton on aug 10th but unfortunately DS became poorly over the weekend, we brought him to hospital yesterday where they decided to do an emergency op to fit an extwrnal shunt and remove a piece of bone in his skull. We arrived just after 11am and he was in theatre by 1pm. So grateful for the wonderful team here. We are back on the old ward we were on last time so it feels familiar and safe, which is nice. We’re in hospital for at least 2 weeks now so proton will need to be pushed back. I think I’m in shock again, but feeling a lot more together than I was yesterday! I hope you are all ok and enjoying your summer hols :-) xx

Thank you for the update, sorry to hear about the emergency op x

Thank you for the update. I hope that you and your family enjoy the Summer as much as is feasible for you all.

I’m glad you had some easier times but really sorry to hear you’re back in hospital. I’m not surprised you’re in shock. Brilliant to hear that you feel well supported by the hospital team. I hope your boy feels better soon after the op 🥰

Sorry to hear your son's not feeling so good but hopefully the operation will have helped. It's good that your hospital team is on the ball and he's receiving prompt treatment.
Here's hoping that he can get some enjoyment out of the end of summer before he starts his proton therapy and his full recovery. x

Sorry to hear he's back in hospital. I'm assuming he's on an EVD?

How's he holding up in himself?

I'm glad that you are back on your safe ward with familiar staff. It sounds like the best place to be.

Gentle hugs for both of you x

Thinking of you, OP. Hope all goes well going forward, and DS recovers from the op. And hope you get a chance to rest before starting the Proton - sounds like you're in good hands.

Thinking of you op and hoping the op does what it's supposed to ❤️

That's really unfortunate that he's needed more surgery - but the team sound really responsive. Don't worry about waiting a bit longer to start proton. It would be better if he can start & have the treatment uninterrupted. Take care of yourself - I hope you're able to tag team your time in the hospital with your DH? It can be so exhausting.

Crikey, how amazing is that that they managed to get him into surgery so quickly. Hopefully the shunt will do the job and he’ll be feeling much better before too long
sending lots of love xx