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

1000 replies

YourRubyMaker · 22/02/2025 17:59

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]
OP posts:
Needapadlockonmyfridge · 01/03/2025 07:55

Happy Birthday to your brave boy, OP. X

FedUpandEatingChocolate · 01/03/2025 08:02

Morning. I'm so sorry you had a bad night.

Just to let you know that they'll probably put your son through a variety of tests before the operation, to get a baseline of where he is. Nothing invasive (beyond bloods) but they'll want to get a full picture.

Regarding pyjamas, just make sure you've got plenty of bottoms for him to start with. Most boys tend to wear just bottoms post surgery, hospitals can be very warm.

For yourself, you'll need a good hand cream, something to distract yourself with by the bedside (dot to dot was my preference!), and your own comfy clothes. As someone who doesn't wear a lot of make up, I ended up making a real effort when my DD is in hospital, just to make myself feel human.

Sending you lots of love

Pearl97 · 01/03/2025 08:03

I’m glad your son has such a fab Mummy. Happy birthday x

Shuntsarentscary · 01/03/2025 08:16

Hospital essentials are;

Button down pjs to help cannulas etc. My child was 0-12 months when he spent his year in hospital so was in button down onesies, but these look a really good option as they’ll allow access for IV’s, especially if they have access through his femoral etc https://www.fledglings.org.uk/products/kapow-hospital-pyjamas?variant=32907648466967&country=GB&currency=GBP&utm_content=sag_organic&utm_campaign=shopping_feed&utm_medium=cpc&utm_source=google&gad_source=1&gbraid=0AAAAAoa9yHiqvmx85LtSV3l6JDUtZSELo&gclid=Cj0KCQiA_Yq-BhC9ARIsAA6fbAgtxasJ5DGM4hSv8VAUJZdk7lgWZpB9EIWgtzmwUQF0c7Wj_P20CfQaAp12EALw_wcB

slippers for you and him - it’s honestly all I wore.

travel cups - we weren’t allowed hot drinks on the ward, but were allowed if they were in a sealed cup.

water bottles with long flexible straws

eye masks and nose cancelling headphones for the hellish nights

a bedside fan for when it gets too hot and stuffy/ your child overheats (we used a rechargeable one)

chargers with really long cables

and iPad with downloaded things for him (and you) to watch as signal can be so bad

a rehydrating spray mist as hospitals are so so dry

this is pathetic, but coloured markers helped me. I would rewrite the notes on his bedside whiteboard beautifully and with colours - it made it feel a little homier and more personal

a bright quilt for the bed, again to try and bring a semblance of home/ normality to the situation

easy to eat snacks on hand for him and you

something mindless to distract you from the mind numbing hell that is hospital - I did crosswords, sudoku, knitted. Anything that distracted me.

very soft and comfortable loungewear for you

zip up tops for your child as easy to pop on and off

lots of Lego/ puzzles/ craft stuff that your child can do in bed (again we didn’t need this as our child was so young when in hospital, but we would see lots of others do this activity. The pay therapist on the ward was very good about providing activities for the kids - as a paeds ward you should have one - talk to them about your child’s interest)

Lip balm as lips get so cracked and dry

our family members set up a rota of feeding us. We were about an hour away from everyone, but between three of them, someone would always come in and see us each day which helped so so much and would bring dinner. We had a room in RM so could heat things up in the kitchen. If friends or family are able to do this to any degree it really helps

speak to the hospital about filling in the forms for financial compensation - I cannot remember how much it was, but you get some financial contribution for every day spent in hospital, and it really adds up. The nurses will be able to tell you, but it’s worth looking into as hospital gets bloody expensive without even realising.

I’m trying to think of other things - I’ll update as and when I do xxx

Kirbert2 · 01/03/2025 08:26

YourRubyMaker · 01/03/2025 07:15

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

Take things day by day or even hour by hour if you need to. I know it's hard but try to focus on the here and now rather than what may or may not be in the future.

Write things down. Any questions that may come to mind, I promise you that even if the question sounds silly they will have heard it before and will answer you the very best they can.

Lean on any family support workers that may stop by for a chat, don't be afraid to be honest with them about how you are feeling. They are really good with supporting families in situations such as this.

If he does need to be in PICU after his op, just be aware that it is very different to the wards. It is intense, there will always be someone close to your son watching him. My son started out in PICU and was there for 7 weeks so unfortunately have plenty of experience with PICU too if you have any questions about that if he needs to be there.

Monday will be incredibly scary but it will also be the start of getting the answers you need.

My son spent his birthday in hospital too, as well as Christmas. Hope he can have the best day possible despite the circumstances.

Thinking of you and your son.

Ihatelittlefriendsusan · 01/03/2025 08:46

YourRubyMaker · 01/03/2025 05:01

awaiting The doctor but back to ward atm . Could any please link me some pjs for after surgery ? Short sleeve and if could be Velcro rather than buttons even better so he can do it himself if needed

@YourRubyMaker try here https://pyjamafairies.org/ for pjs

If not, do you have friends who are good with a sewing machine who could adapt some?

I am in the Nottingham/Sheffield area of the country, happy to help if I can.

Changed18 · 01/03/2025 08:48

Happy 11th birthday to your DS, @YourRubyMaker. Sending lots of birthday wishes. 🎂🎈🎁for your DS and Daffodil🌷for you.

I’m sorry it was a bad night. I hope today is better.

EdithBond · 01/03/2025 08:51

Morning @YourRubyMaker, sorry to hear it’s been such a disturbed night.

Birthday love to your son ❤️. I know it’ll seem weird to celebrate, and he’s probably shattered and the shock starts to come out as emotion after a couple of days. So, don’t be worried if there are a few tears today. It’s good encourage lads to let emotion out.

My DS didn’t have a birthday in hospital. But I kept trying to do and say silly things to make him laugh, as laughter really is the best medicine. And the more ‘normal’ you can make it feel, the more relaxed and comfortable they feel.

Do try to push for a side room if you can, so he (and you!) can get some privacy and decent sleep. My son had a major emergency op (not brain) and returned to the room (on high dependency, with ventilation, monitor and feeding tube) afterwards. But it may not be possible with brain ops. The ventilation tube made his throat sore and he needed to cough up a lot. He’ll definitely be in a gown after the op, so not sure you’ll need special PJs.

Items I suggest:

  • A support pillow or pillow (and maybe favourite blanket or soft toy) from home
  • Couple of plastic jugs or bowls (e.g. from pound shop) in case the nurse can’t come when he coughs up - and for cleaning teeth in bed

Then, once he’s mobile again:

  • normal PJs (long legs but short sleeved)
  • sports sliders or slippers
  • baby wipes to freshen up
  • wash bag (preferably one that hangs) with shower gel, toothbrush/paste
  • towel
  • comics or comic books to make a change from a phone screen and easier to read than a book
  • squash (when it’s allowed) to make it easier to drink the water
  • dried fruit, like apricots, banana chips, raisins etc
Tholeonagain · 01/03/2025 09:02

Birthday love to your beautiful son and to his amazing Mummy. I am so sorry the universe is torturing you in this way. You will keep going, one minute at a time. I hope you have real life support too and people who can help with the practical things you need - do ask them too. If you don’t have those people, let Mumsnet know - roughly - where you are and we’ll do our best x

YesHonestly · 01/03/2025 09:02

Sending birthday wishes to your lovely boy and hoping for a better day and night for you both today x

Friestogo · 01/03/2025 09:05

So sorry to hear you have had a bad night. Sending love and birthday wishes to your boy 💙xx

ArabellaScott · 01/03/2025 09:08

Happy birthday to your son, OP. Love to you both. I hope today is better and you get some rest. Daffodil

EdithBond · 01/03/2025 09:09

@Shuntsarentscary good shout about lip balm! Hospital do make your skin so dry! Lots of face cream for you @YourRubyMaker.

In fact, get your DH or family to make you up a goodie bag with a posh face cream, hand cream (constant handwashing makes hands sore), favourite perfume, magazines, slippers, crossword book, herbal tea bags, posh instant coffee, sparkling water, mints, healthy snacks like nuts/dried fruit, flapjack. It’s amazing how tiny things, like a little spray of your fave scent, can keep you going.

And don’t forget your fave undies! I had a (rare) laugh with another mum on kids ward whose DP had done same as mine and brought my most horrible and ill-fitting knickers and clothes I hadn’t worn since about 2001!! So, don’t assume what change of clothes he’ll know what to bring. Loose fitting, light track pants, t-shirts and hoodie are best.

rainbowstardrops · 01/03/2025 09:10

Oh I'm so sorry @YourRubyMaker** how awful for you all.
Hoping your brave boy can at least celebrate on his birthday Flowers

CheshireCats · 01/03/2025 09:12

Sending you and your son the biggest hug op.

EdithBond · 01/03/2025 09:29

Primark do really good cotton boys PJs, with stuff they like on them: Marvel, football, gaming stuff etc. I’ve always bought my lads PJs from there: https://www.primark.com/en-gb/c/kids/boys/boys-nightwear-and-underwear?page=2

somethingischasingme · 01/03/2025 09:34

Happy birthday to your son. Good luck today. Xx

T1nyDancer35 · 01/03/2025 09:39

Happy birthday to your brave boy. Sending so much love to you both xx

AlexandrinaH · 01/03/2025 10:01

Happy birthday to your little boy. 🎂

itsgettingweird · 01/03/2025 10:31

Happy birthday to your boy.

Have you had any answers to what caused the overnight emergency and if they have changed plan of action from it?

Pegsmum · 01/03/2025 10:37

Sending birthday wishes to your son and sending you love and support ❤️

lukelovesu · 01/03/2025 10:43

Best wishes and a massive hug to you and your son on his birthday x

Greenwallpinkwall · 01/03/2025 11:01

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Strawberrylacy · 01/03/2025 11:08

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Lots of handwashing in hospital so Id imagine hand cream would help, they can get very sore/contact dermatitis from frequent washing

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