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]

Thinking of you and your family, OP

Just been told we can’t be moved into a quieter ward tonight 🤦🏼‍♀️

Oh that's just adding to the rubbishness of it all. You need your rrsst to be able to support your boy.

Ask if they have ear-plugs....

Hopefully noise cancelling headphones for your boy might help and earplugs for you.

I'm so sorry to read what you are going through. I know there are no words xx

Best advice I got (similar but not same situation) was “stop trying to see the future, shut that down, only look as far as feels comfortable. & in these early days, that might only be a few minutes ahead, certainly no further than today”. That seemed like a weight was off me, I had permission to only concentrate on the here and now & I do believe that protected my MH in those early days. The day of the Op, was strangely calm. I handed by DC over to the surgeon & anaesthetist (had met them the day before & they were lovely) somehow felt relief! I could do no more, he was in their hands & I actually slept (minimum 8 hour operation). I felt way more human when it was time to go back.

Be kind to yourself, you have done everything in your power to get him this far, he’s lucky to have you on his team.

Ask about hospital accommodation if your DH wants to come stay over. Big hospitals usually have rooms either onsite or very close by for relatives. Sometimes free, usually heavily subsidised, so that relatives can stay close by.

Keep a diary, it will help to see just how far you’ve come. It will be a long, tough journey & might help to look back on. (You never have to look at it again if you don’t want to)
Try to nap whenever you can, snack on healthy foods or smoothies if you can’t face eating. Your boy needs you to look after you too.

Sending you both love & handholds. Desperately hoping you get the best possible result on Monday. Xx

I’m so sorry you are going through this. Best wishes for the operation next week. I’ll be thinking of you all x

does the hospital have a Ronal McDonald house? I know how fab they are if they do. The idea of a hotel room locally if not. I am so sorry this is happening to you.

Oh crap OP. Try and get some ear plugs and eye shades. It is awful on children’s wards at night for trying to sleep. Get DH to swap for a bit to give you a break. You will need your strength for next steps.

I will be thinking of you all on Monday. I really hope your little boy gets moved soon, the noise on top of everything else must be tough x

Thank you so much for all your support I’ve got more on here than anywhere except immediate family and I am really grateful

I’m so so sorry you’re all going through this. I cannot imagine. I am praying for you and that Monday goes ok. Stick with your instincts, you are so strong xx

Hugs

Practical thought here if that's ok - get some button pjs (either get a friend to drop them off, get them Amazon lockered to the hospital or something), that way they don't have to stretch over his head.

@YourRubyMaker Another practical note - I’m not sure what you usually do for work, if you have access to paid sick leave, make sure your GP signs you off work with stress. You can self certify for the first week x

Just wanted to add you are amazing and your son is so lucky to have you in his corner. If not for you things would have gone undetected a lot longer so well done for being amazing. Try rest as best you can, easier said than done I am sure, but your boy is gonna need you to be strong for him in the next few weeks. I wish you all nothing but the best for Monday and will be here if you need to cry/let off steam while you wait.

Ah no. Poor wee mite. I’ve been thinking of you all day since I read this morning.
Hoping and praying that all goes well for you all ❤️

Try to get ear plugs. Boots sell child sizes, for example.

@YourRubyMaker
Op could you and your son try falling asleep with ear buds in, listening to something?
I know they can be awkward to sleep with but there are some which hook over your ear so they don't fall off. Perhaps not the best for side sleeping but maybe if sleeping on your back/reclined?

I know its still noise and not a quiet room! but sometimes it helps me sleep when there's too much noise outside.

Hope you both get some sleep tonight.

Thinking of you OP and praying for you and your son and the best outcome possible. You are in my thoughts and well wishes ✨🫂💕

OP I have been thinking about you and your son all day today. I really hope and pray that Monday brings a positive outcome and steps forward for your precious boy and am so sorry that you are having to go through this.

Thinking of you, OP. I hope you and your lovely boy do manage to get some sleep xxx

I had to spend a few days on a noisy ward and one thing that helped with the noise was headphones with white noise playing.

I hope you get some sleep tonight. Weekends on the wards are werid as the hospital is a bit quieter. I'd recommend going for a wander round just to see what's where. My children's hospital has a huge fish tank which was something different to go and see. Borrow and wheelchair and take DS for a spin if he's not up to a walk.
And if you can face leaving DS, swap with your DH and have a night in your own bed this weekend and get away from the hospital. Post surgery you won't want to leave his bedside, so take a moment at home if you can.

Oh goodness, I hope you can both get some sleep tonight and some rest over the weekend. I hope the op goes well on Monday xx

I'm praying for your son. You must be worried sick about him, and especially about the impending operation.

I hope you both get some sleep. Wishing your gorgeous boy a happy birthday. Sending love and prayers to you and all your family.