Out of my mind with worry [Please read the OP's updates before responding - Title edited by MNHQ]

[YourRubyMaker]

Someone please just give me some hope I’m so stressed I can’t function , my 10 year old since sept has had a limp in one leg then it became a weekness in his arm and hand on the same side , doctor was useless and made me do it as two separate issues and make another appointment!!! Didn’t take me seriously and Had X-ray on hips all fine (obviously 🙄 ) I went to see another doctor who said im referring it for urgent peadeatric appointment (great so helpful ) and he wanted to refer for mri but couldn’t , appointment comes thro and it’s in fucking June !!!! And that’s a urgent referral , in the mean time it’s got worse and now he can’t run and often stumbles and falls doesn’t use the arm hardly at all , have taken him back and they’ve now booked a mri brain scan for next weekend , which happens to be on his birthday of all days 😭 he’s mental health is shit as is mine and he’s obviously worried , how long does a brain mri scan take please ? And has anyone ever experienced issues like this and it not be something life threatening, I also have a toddler so am still having to be normal and do normal stuff where as I just want to lay in bed and cry

• [Message from MNHQ - please see OP's updates before responding]

When my DS was in surgery I couldn't bring myself to leave the hospital, but I wish I had. Definitely try to keep busy doing things, buying stuff you need or try to distract yourself (easier said than done).

Thinking of you

Yes to think about how you want to update people. We set up a WhatsApp group and said we’d only update there. If anyone else messages, we just added them to the group. I couldn’t be replying individually!

Would it be worth hiring a Premier Inn room or something and taking a Nytol or similar and at least trying to sleep during those 14 hours.

I know that will be hard but you must already be absolutely shattered and once he is back from surgery you will want to be by his bedside. Try and take those 14 hours to sleep and rest even in the day if you possibly can.

I hope everything goes well OP. You must all be so worried.

For those offering to PM, private messaging is currently disabled and has been for a week now. MNHQ are now saying it should be back early this week.

I would have a look and see if you could get a room in a premier inn nearby. At least you could have a shower, sleep/read/watch TV, and just rest. Wish you all the best for tomorrow.

How far are you from home? I know you said a distance away but if a train is easily done or uber possible?

❤️

I was going to suggest this.

You are supporting him wonderfully. But you also need to take care of you as well - you can’t do anything to help for at least 14 hours and you desperately need sleep.

Ask the hospital if they have a room available

My local hospital has rooms where people can stay for £20 a night

Getting a room in a hotel nearby is a good idea. You might surprise yourself and sleep. If not you can at least have a shower and rest on the bed if you can.

I'd think for a 14 hour surgery you'd get a few updates in that time. During a 7hr surgery we got 2. But they basically just said "all going to plan". It was still reassuring to hear that rather than nothing.

I'd delegate a friend to set up and monitor a WhatsApp group for you. You can send one message to them and they can filter all the replies. It's exhausting otherwise.

When DD was in PICU in BCH there was a reclining chair bedside, a few rooms onsite, and a Ronald McDonald round the corner. The hospital should make you aware of this OP, there will be a coordinator who will sort it for you. I stayed in an onsite room one night but bedside the rest of the time. Everything crossed for tomorrow x

Best of luck for tomorrow.

Sending love and prayers to you and your family.

Sending you and your family much love and hugs.

I hope the OP goes well for your lovely boy tomorrow. X

Hi following this thread and sending lots of love. If you are in Newcastle area I can meet you tomorrow x

I will be praying for your son tomorrow.

Very lucky and Managed to get a Ronald McDonald room which means I can stay there whilst hes in high dependency

Thanks for all the well wishes

I hoped you would get a McDonald room. I’m so pleased.
people often forget how wonderful this is! Xx

That’s good, YourRubyMaker. Will be thinking of you both tomorrow.

That is very good news about the room, @YourRubyMaker .
I will be thinking of you all tomorrow, I hope your son's op goes well.

Oh that is excellent news and hopefully you manage to rest as well.

Ronald McDonald are amazing!! Plea for anyone if you are ever in Mac Donald’s and have some extra pennies they usually have a collection point inside.

will be thinking of you tomorrow OP. Xx

Are you at BCH op (if you feel happy to say)?

it’s normal for these operations to take this long. I know it will be an agonising wait but he’s in good hands. They wouldn’t be operating if they didn’t feel confident. Sending you well wishes xx

That's a bit of good news for you, they're amazing. You'll find a community of folk going through similar tough times, which might help.

I hope it all goes well tomorrow and you both get some sleep tonight.

Just to say that I am thinking of you and I hope tomorrow goes smoothly.