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]

My son was in ICU comatose for 6 months with a severe brain injury. I simply could not cope with thinking of the future. It was honestly hell on earth. There are times when you feel you cannot go on a second longer but you can and you will. Only those who've been here truly understand. Be prepared for an emotional rollercoaster some 'good' days and some dark days when you cannot see the light.l

Your boy will need his mum and dad. We had to fight for the best for our son, you may have too to. Be prepared to stand your ground when you need. Take advantage of the lulls and quiet times to try to get some sleep/a shower/some food/see the GP if you need some meds to cope - I got Valium for a short time.

Try to learn some coping skills or distractions to get through it all. Don't entertain people who don't know what they are talking about or who are nosey and prying. You do not have to tell everyone who asks anything. Give a wide berth to people who drain you. I shut a lot down as it was beginning to exhaust me. Some of my friends sat with me and said very little; they were just there with me quietly, which helped so much. May your strength and courage guide you as you move ahead with what's next. I will be thinking of you.

I totally understand that you probably don't feel up to it right now but please if you can really push for a side room or a quieter location on the ward. You all need rest and peace and how can they expect you to get that on a noisy ward.
I am honestly sending so many positive wishes for Monday and i am praying that the outcome is as positive as possible. Thinking of you and all of your family. Feel free to use this thread to rant, ask advice or just silently read. We are all here for you in whatever way we can be xxxx

Does he need to be in hospital until Monday? If he is well enough, i.e. no medications or monitoring that can't be done at home, could he not just go home until Sunday afternoon?

Sorry if this is ignorant question but I'm not a doctor etc.

That’s good they’re moving so quickly with surgery. They will let you be with him until he is under the GA, and from experience there will be someone with you to offer support once he’s under and you have to leave him. It’s very calm and non-invasive from the child’s point of view (I assume he’s already cannulated). It is horrific for the parent (I collapsed in the hallway on the way back to the ward after leaving my son for the first time), but the support worker really helped my husband and I to cope. Check beforehand, but there should also be someone who will update you periodically throughout the surgery to let you know he’s stable etc as it’s such a long one - ask about this in the morning before he goes down. The wait for surgery is awful, just awful, but the second it begins the second you start being closer to answers and the next step of treatment and recovery. I truly am so sorry this is ahead of you, surgery, and especially brain surgery on a child, is not something I would wish anyone to endure. I do mean what I said upthread, the brain and its ability to heal and adapt is remarkable. We were on a neuro ward for the best part of a year, and the children we watched (including our own) heal from the most shocking illnesses was just incredible. Your son is remarkable and so are you. I will be thinking of him and you xxx

I am so sorry to read your update. None of this must makes sense for him, you and your family. It's a very hard time while they are establishing the facts but so necessary for the right plan and now they have the MRI, they have arranged the op so quickly. I am sure he is in the most expert hands with a gifted and compassionate specialised team. I hope the op is very successful. Please look after yourself too.

@YourRubyMaker does he have any headphones that might help with noise?

I’m glad things are moving quickly and I will be thinking of you Monday.

Hopefully moving to a quieter ward with children his own age or teens will be an option once they have a better idea of where he needs to be. Having peace and quiet to rest will help you both massively.

@YourRubyMaker thinking of you all. Hope you get moved and get some sleep.

@YourRubyMaker

Saw this heartbreaking thread for the first time today and wanted to send you love and prayers.

Hold on to the fact that not all brain tumours are cancerous and it is still perfectly possible that this isn’t. As hard as this is, and I have absolutely no experience of it, try to hold on to positivity and not allow yourself to think anythjng other than a good outcome.

Wishing the best outcome for you all xx

Thinking of you OP, I’ve been thinking of you since your updates and just want to wish you best of luck with the op. Ye will know what ye are dealing with and I’ve no doubt you have a strong little boy. My lb was in hospital recently and the sleep deprivation was tough. I brought his own pillow in, lavender spray, an eye mask and he even tried foam ear plugs. No doubt someone has suggested already but it did help.

Yes you're right its a very difficult situation and as we all know hospitals have very limited spare space. I just really feel for the OP and her ds and hope they can get some much needed rest and sleep if at all possible after everything they've been through over the past couple of days x

Sending lots of love and birthday wishes for your son tomorrow.

My youngest dd has had lots of scary operations with the NHS. They are amazing in situations like this.

I don't know what hospital the operation will be at, but if there's a Ronald McDonald house, definitely get booked in there. You can get it sorted before you're transferred with the help of the ward he'll be going into.

So hope it all goes well on Monday.

I will hold you both in my thoughts this weekend xx

He's equally could be on a neurosurgery ward. They like to keep a very close eye on kids there so unlikely he'll be allowed home or a side room.

OP, is there a Ronald McDonald where you can stay, your toddler could come too, but honestly if there are grandparents who can have her for now that might be worth considering.

Wishing you all the best for Monday.

A tiny ray of hope is that if it's been there for a while then that might indicate something slower growing which is often 'better', but I'm not going to pretend the wait for pathology is anything but hell.

Well done on pushing for this scan. In doing so you may have saved his life. You are an awesome mum, just keep on going and get to Tuesday first.

Thinking of you all. I hope tomorrow has moments of joy.

Take very good care of yourselves and good luck for Monday.

So sorry OP. I’m sorry too to hear it’s such a high risk operation. I hope so much that he survives it. I will be thinking of you on Monday

Sending so much love and strength your way for Monday OP. These awful situations are when the NHS is often at its very best.

You sound an amazing Mum to have advocated for your son and followed your instincts.

@YourRubyMaker

I just want to add that my cousin had two huge brain operations after two very serious bleeds on the brain. Two huge operations within 8 days of each other. She was 65 at the time. She’s going to be 69 in August this year. Back to walking ten miles with her dog, back to 99% of her old self.

I'm sorry, op. I can't begin to imagine what you are going through. I really hope you manage to have a better nights sleep tonight, and he has a good birthday tomorrow.

I hope it all goes well, I can't begin to imagine how worried you must be. I know two people who underwent brain surgery to remove tumours years ago (in one case diagnosis took months if not years) and they are now leading completely normal lives. Thinking of you.

Oh goodness, I'm really sorry you are all going through this. I hope you do manage to get some sleep as although it won't make it all better, you will probably function a little better.

Sending you every positive thought for the days ahead. 💞

Hi OP I really hope you get a more private quieter room, you both get some rest and you have your answers soon. I’m glad the surgery is asap they are clearly taking it seriously and you’ll have lots more information and a plan once they’ve done tbe surgery and have biopsy results. Wishing you all as happy a day as possible tomorrow and a safe and successful op on Monday.