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]

Sending you love

If you end up with a long sleeved pair you could just cut the sleeves off to short sleeve length and slightly roll the fabric then put in a couple of stitches to keep it in place. I have done this for my son with l/s tops as he prefers short, and I'd imagine the ward is quite warm. Just cut off they'll work for a while without fraying too much.

Things to buy or bring for both of you- eye mask, slippers/slides. Blanket, extra phone battery

Hi OP
I worked in paediatric oncology and want to reassure you that so many outcomes are so positive
here are some things which may make post surgery more comfy for you both

for him:
fluffy socks
his own blanket or fleece
V shape pillow to help him lie or sit comfortably

for you:
slippers to wear on the ward
lounge wear - Asda have some nice stuff

would he fit into an xs men’s pjs?

My son's first op was risky too, his odds were 50-50. He ended up having 5 bowel surgeries in total, the longest was 8 hours.

Remember that the doctors and surgeons have to tell you the worst case scenario for surgery but it doesn't mean that it will definitely happen. The consent form is going to be scary but they have to let you know all of the risks, even the incredibly rare ones.

My son has been on several wards and from about 10pm, the lights are lowered and quiet time is expected. Don't be afraid to have a word with the nurse who has your son overnight and tell her some TV's are still on etc they will happily go in and tell the other family that TV's need to be off at this time. Noise cancelling headphones are a must too, eventually my son did get used to the hospital environment but at first he really struggled and headphones really helped. He also had some of his favourite music playing to drown out the noise of the machines etc too just until he fell to sleep.

Monday is going to be an incredibly difficult day, you don't know how you'll get through it but you will. I promise.

I'll be thinking of you and your son.

I'm so sorry to read this. Sending love and thinking of you and your boy. I fount these, expensive I know but next deliver the next day, www.next.co.uk/style/su464018/ag9067#ag9067

I'm assuming he'll be in PICU after surgery or at least HDU? They may want him in a hospital gown first which will provide easy access to any central lines they may put in which will enable them to take blood, give pain relief etc without constantly having to poke him as well as be able to monitor his head.

He'll likely also have sticky round pads on his chest directly after surgery so they can monitor his observations. Directly after my sons surgeries, they did his obs every hour. They may also run blood gases too which will tell them how his body is coping with surgery.

All that to say, I would just stick with regular pj's. Having a child in hospital, especially if it needs to be long term is incredibly difficult financially so I wouldn't go out of your way to get special pj's when they will likely not be necessary.

My son was in hospital for 308 days in total and I would say the essentials were:

Slippers
Extension lead cable to charge phones/devices (plugs are always either scarce and/or in the most weird places)
Something from home for your son such as a blanket, a cuddly toy, just something familiar and comforting
Support pillow for you and/or your son

Please feel free to message me if you have any questions or just want to chat to someone who has been there.

I wondered about these in an XS as they seem to be men's PJs?

https://www.primark.com/en-gb/p/poplin-pinstripe-boyfriend-pyjamas-blue-991126257505

Or H&M boys? Cotton flannel pyjamas

https://www2.hm.com/en_gb/productpage.1248876002.html

Or Zara:

https://www.zara.com/share/6-14-years--striped-shirt-style-pyjamas-p01562697.html?v1=410594721&utmcampaign=productShare&utmmmedium=mobilesharinggiOS&utmsource=reddsocialmovil

Try pyjama fairies. They do special
PJ's and hospital gowns. The hospital may already have some. But probably a standard surgical gown is better if you can't get them.

Oh missed the bit about short sleeves. Will keep looking. Sorry!! Can't edit on my phone.

I believe pyjama fairies maybe free. But not sure.

OP, sending you and your family love and all the best wishes. Same to all who have shared similar experiences on here. 💐

Pyjamas Fairies are amazing they create pyjamas for kids specifically for post op so with custom gaps for catheters, lines etc

pyjamafairies.org/

Thanks everyone, I will take onboard advice and maybe see after the op as I’m guessing he will be in a gown for a least a few days , can’t believe it’s his birthday like this just really hoping we can get out of the ward for some of the day like planned but given the circumstances in the night I’m doubtful but hopefully we hear soon

Unfortunately messaging is disabled but I’m very grateful for advise etc

Sorry should have said they're free, just postage and can be made to order really quickly for emergency surgeries.

My daughter had a huge op - spinal fusion and she loved hers.

Happy birthday Master @YourRubyMaker . I'm sorry you're spending it in hospital but I hope you have some nice moments.

Happy birthday to your son OP, I hope there are some nice moments together. I'm sending you both lots of virtual luck, love and strength ❤️

Sending love OP and Happy Birthday to your son, though obviously it's not the one you'd planned. Will your husband and little one be able to come over for a couple of hours?

Wishing your boy very good wishes on his birthday and much luck for his surgery and recovery. Bless you all.

So sorry to read your updates OP. What an awful birthday for him and terrible experience for you both.
Sending good wishes and hope you both manage some rest.
You're in the best place possible and they know now so they can tackle it

Hoping your brave little man gets some moments of happiness on his birthday OP. For what it's worth you have all of us mumsnet users sending him birthday wishes xx

No medical words of wisdom here but sending love & strength to you & birthday wishes for your lovely, brave boy. Thanks goodness you pushed for the scan.

So sorry you’ve had a bad night.
Comfy pjs or joggers/t shirts if he prefers
Slippers or sliders for walking around if possible
Ipad if he has one and headphones so he can watch what he wants in peace
books if he likes reading
Some favourite snacks for when he fancies (obviously not when nil by mouth before surgery but other times).
For you- clean clothes, baby wipes, toothbrush, book or kindle for quiet moments, snacks for you etc.