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]

So glad to hear he's out of surgery and you can be with him soon. The fact the tumour is connected to main arteries may actually be a good sign, as this is most common in hemangiomas, which are usually benign. I hope you have answers soon and that it's the best possible outcome.

Fingers crossed that it’s good news in the morning, hope you get in to see him soon x

I just want to say this thread and your helpful comments and well wishes has really helped me so thank you all , I will start a new thread once this one is full as it’s helped get me through, I will call it out out my mind with worry part 2 as I have no clue how to share a new thread , I’m so full of adrenaline I’ve not cried yet today but I think the tears will come once I’ve seen him later , the surgeon gave me lots of information on the phone and I didn’t manage to take it all in as I was just so relieved he’s out of surgery but I think they may have said he was ventilated so need to prepare my self to see that shortly 😔

@YourRubyMaker my sister had a 14 hour op some years ago and hers too was in a position that they couldn’t fully remove as the arteries in most people’s head go around whereas hers was in a cluster. She ended up needing a shunt put in a few months later to drain cf fluid and following that had another major brain op and they got almost all removed. She has God willing and touching wood been great as past few years she had possibly 6 ops regarding shunt but all in all is doing well and I really hope this is the case for your son too. My break breaks for you and you have a long road ahead of you with recovery but your gut told you your son wasn’t well and because of that you have got him to this stage. Xxx

Been thinking about you and your little boy all day today. Pleased that the surgery has gone as well as could be expected, and hopeful you get some good news at the meeting tomorrow ❤️

The surgeon won't expect you to have taken it all in. I'm certain he expects to need to explain it all again tomorrow. And quite probably all over again after that. He didn't tell you because he thought you could take it all in one go, but because as mum you have the right to know. Wishing you strength for going to see your son. I fear he will look heartbreakingly vulnerable. But talk to him and hold his hand. He may not be conscious, but he will know you are there, and take comfort.

Being ventilated is really normal after this sort of thing. They can go through everything with you many times if they need to - it's all part of the job.

What a warrior you are for getting through such a difficult day. So glad you'll be reunited with your son very soon. Praying that tomorrow's meeting brings you as good news as possible and that your son is on the road to recovery. Thank you for taking the time to update us when you are going through so much xx

I’m glad you’ve got somewhere comfortable to stay @YourRubyMaker and I hope you start to get some answers tomorrow.

Been thinking of you and your precious son all day, and the rest of the family too. It's so kind of you to update us when you are dealing with so much and I'm glad you feel the love and support from all of us.
Wishing you lots of strength to get through this - you are a wonderful mum. Xxx

Thank goodness it's over and he's out safely. Keeping everything crossed for good results from the MRI and a good start to recovery.

Intensive care and seeing your child intubated is really hard, nothing can fully prepare you for that, but if you get upset that's ok. He won't be awake so you don't have to be strong for him. It helped me to remember that my daughter wasn't intubated because she couldn't breathe, or because her body wasn't working properly, but because she was still under anaesthetic after one of the biggest operations you can have. It's part of the plan. They'll also be keeping an incredibly close eye on him.

Thinking of you.

You have been in my thoughts all day today OP. I am so pleased you will get to go and see you beautiful son again any minute now, no matter how difficult that may be in some ways he needs his mum and I’m sure you need him. Be kind to yourself and know we are all here behind you all.

Been thinking you op. I'm glad he's out of surgery. Just take everything one step at a time

Been following your story and haven't commented so far, but I have been rooting for your DS. Stay strong and I wish that I could have a word or two with your GP......

Thank you for the update. I continue to think of your family - I hope the mri goes well.

So relieved to see your post and know that you will be able to see your boy soon.
You are amazing and strong.
(Some of equipment post op and the noise from it can be a little overwhelming. I found that - but I just tried to remember it was helping my mum get better.)
sending lots of love and strength xxx

It sounds like the surgery went as well as can be expected and he's a fighter.
I hope you're with him now x

They still haven’t rung so I’m desperate to see him now and hope that they call any second before I start to worry

Children can be incredibly resilient. Particularly when they have a loving family by their side. I am so pleased to hear the operation is over. Sending you love & best wishes for tomorrow’s meeting. I hope it’s positive news x

Just adding to the well wishes. 💐

I hope you both have a good night, and that the mri is as clear as possible. You’re both so brave, I wish you all the very best of luck x

Sending love ❤

IT's almost time to get to see him, you can do this last wee bit waiting. You've got this! Maybe go take a look at what craziness AIBU has thrown up today. It's almost time to see your boy.

When you do. Just breathe, and ignore all of the tubes and machines and noise. Focus on his wee face. That's your boy in there, and he'll hopefully hear your voice and know you are there with him. That's all that matters today.

Sending you and your brave boy all my love and support and wishing you every luck in the feedback tomorrow x

I’ve been thinking about your son all day. I’m so glad the operation has ended, and you are getting ready to go and see him. Wishing your brave boy a good recovery.