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]

Happy birthday to your lovely Son OP.

💐

To be fair, sounds like good advice to me as someone who's child spent 10 months in hospital.

There's a lot of waiting around, especially when your child is in surgery and you will do any little thing to keep your mind off it once you've exhausted everything else.

You have to wash your hands so much in hospital, especially if OP's son does have cancer and ends up on the oncology ward. He'll also have a central line which means extra hand washing too because they can become infected and if OP's son needs any treatment such as chemotherapy, it means he'll have little immune system and any infection can become serious. Hand washing is vital.

There's also nothing wrong with OP taking some time for herself to have a shower and put on some make up if that will make her feel better. Mental health is so important and nurses etc caring for her son will tell OP that too.

I'm sorry to hear it's been a difficult night. Happy birthday to your lovely son. Sending you all strength and best wishes.

@YourRubyMaker - I’m so so sorry you’ve had such an awful night. Been thinking of you so much and sending love and watching out for your updates. I hope your DH is ok too and able to visit and support you. I can’t imagine how difficult it is for you as a family with him at home with your toddler.

I was wondering if this was appropriate for your son as a distraction during his recovery. Has he got some kind of small airbuds and perhaps his own Spotify and Audible subscription so he can lie and listen to his own music and stories?? I checked and there are lots of kids books on there. It may help him escape from his surroundings and the situation without straining his eyes watching screens.
I also wondered whether thick comfy socks may be useful? Certainly slippers.

Really hope family and close friends are rallying for you and you can see your DH and DD today too.

sending love and support - you are amazing and strong and your son is incredible. You will get through this xxx

Sending you much strength and lots of love x

I've spent months and months bedside with my daughter whilst she underwent open heart surgery and other surgeries. I'm sharing what helped me, no need to be negative on a post like this.

You'd be surprised. I spent 6 months as in patient with my son in GOSH. One of the best things I did was buy myself one of those beauty boxes full of nice hand and face creams. In fact, I'd recommend that as a present to anyone who is looking after a kid in hospital. Anything to make yourself feel special or normal is a godsend.

Not to mention all the handwashing and disinfecting that goes on, your hands get incredibly dry very quickly.

I'm so sorry OP. I've had a similar experience and this is what would have helped me to know when my son first got diagnosed.

the first few weeks are the worst. You're in shock, you have no idea what to expect or what you're all doing, and you're terrified. What you'll find is as the days go on, and the reality sinks in, it becomes much easier to cope.

It won't feel like it now, but you'll end up in a new normal. People used to go on to me about how strong I am, but you don't feel it, or don't understand, as all you're doing is living this new normal. It's hard to explain, but you'll get there.

Try to find some facebook groups for kids with the same diagnosis. It didn't occur to me to do this for months after we got diagnosed, and it's so so helpful. It also creates a feeling of community. I feel like some of these parents, who are from all over the world, are my friends, due to the similar journeys we've all been on.

Hang in there for now. You're in the absolute worst part of it all.

My child was much younger but headphones or earplugs, pjs or loose comfy clothes, kindle or iPad loaded with books x

Sending you the very best wishes. I know you're being strong for him, but you must also take care of yourself. I hope you have people you can vent with xx

Sending thoughts, support and birthday hugs to you guys.

We are thinking of you.

Insulated mugs and a flask are what I take when visiting inpatients. Alpine ear plugs are great.

Quite a spiteful comment to make. Not needed on a sensitive post like this. People are just trying to be kind and actually I agree with this. If only one small thing makes the op feel a tiny bit better that’s helpful

Happy birthday to your DS. I know you will make it the best it can be.

Many happier returns to this day in the future.
Sending love 💞

Sending love and strength to you and your lovely boy.

Also sending love to all the amazing parents here who have been through similar situations and are sharing their advice while holding your hand. XXX

My heart really goes out to you OP, what a difficult situation.

My experience with a child in hospital is that food and drink for yourself is hard to organise, and gets expensive.
If you have anyone who offers you help and you don't know what to say, perhaps asking for them to do a regular snack and drinks bag for you and your son to keep you going.
Also I did the hospital times alone as I had 2 other kids and dh was looking after them. It became very lonely and hard. So if there is anyone who can look after your toddler to allow you and dh time at the hospital together it really helps.

Just requiring this in case @YourRubyMaker missed it… specialist all ages pyjama company for post op children x

My DC also had brain tumour removed. They couldn't get anything over their head for ages, so we had lots of button up short sleeve shirts and zip up hoodies for the first few weeks. I don't know where in the brain your boys tumour is, but lots of children are very sensitive to noise and light after the surgery, so dont worry too much about finding things to entertain them in the first few days or weeks, they will need lots of quiet, rest, gentle touch. They might have double vision for a while, so reading, tv or gaming isnt possible. Some may not be able to walk or talk for a while.

It might be helpful to think about what might help you get through this next 2 days, for me it was having lots of people ring and message me, and sending stuff to us. For others it is music, earplugs, one mum I know was prescribed a mild sedative and her own mum took over caring. If you can take care of yourself for a bit, or someone can look after you, you will be able to care for him.

He is highly likely to at least be in HDU immediately afterwards, which is a much calmer safer environment and you won't need to be as vigilant as he will get 1:1 care and supervision. After that, just remember recovery isn't linear. You will get amazing leaps forward and little setbacks, don't let the setbacks get you worrying. You will feel so much better when the damn thing is out.

Thinking of you all on his birthday and hoping he is comfortable xx

Was coming along to recommend Pyjama fairies too, but can see someone's beaten me to it.

From one brain tumour Mum, to another, I'm thinking of you and your boy x

Just to say, I have been thinking of you since I first saw this thread, and sending love and strength.

I hope everything is ok with OP. It’s concerning she hasn’t updated at all. Everything crossed xx

Thinking of you.

Hopefully just busy with birthday - I can't stop thinking about you all xx