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]

When my son had major surgery for a serious injury after an accident me and DH did leave the hospital and go for a walk around the area and for something to eat (we were not in our home area). It did help us to think about something else for a while, and reduce the stress. I think it is good advice to go out, at least for a while.

Download a crappy film to watch while the op takes place. I watched Maid in Manhattan. I think it streamed ok on nhs WiFi -ask the nurses for a password if you have limited data.

Also the doctors will say how long the op is but not factor in the observations before and after so don’t worry if it seems like it’s taking longer. You can ask to go to the recovery room. He may talk nonsense and be nauseous but a lot of things are the anaesthetic wearing off.

You may not want to leave the hospital but rest and eat and drink.

Do not be tempted to ring round loads of people out of ‘duty’ unless they are going to be supportive.

Edited to say: others have said they did go out - so my advice is read what others have said and then do what is best for you!

IME they call you when your child is in the recovery area so you can be there when they start to come round. But mine had relatively short procedures. Ask what the routine is where you are, and check if there’s also a number you can phone for updates.

But I really would try to get out and have some fresh air/see some sun. Important to look after yourself too, so you can look after your DS.

They will call you after the surgery. Which might be earlier than expected or later. That is all normal so please don't worry. It might be worth clarifying this with them so in case they do call you in the middle to update you, you don't freak out that something has gone wrong. Ours called us to the ward, so do discuss that too. They didn't tell us over the phone which I thought was a bad news, but it wasn't. All went well. So do agree all of this with them prior to the surgery.

Try not to hang out around op rooms as you will be desperately looking at anyone who walks around and you will will think they know something about your son's condition and you will be looking for signs, such as smile. When they don't smile, you will think something has gone wrong and they don't want to tell you. Its a strange time and you are desperately looking for anyone to tell you anything.

I see you mentioned that messaging is disabled, if you want to connect (I am an onco mum), please let me know I can work out how to do that.

My son's longest surgery was 8 hours and I got 1 phone call during that time to update me. They will usually call you but be prepared that it probably won't be regularly because they will be so busy with your son.

Continuing to think of you and your lovely son OP. I’ll be thinking of you and hoping for the best possible outcome tomorrow. Xx

10 hours is a very long time. It'll feel like days.

Even if you can go for a walk, have a coffee - perhaps go shopping for some pjs for your boy it'll help pass a morsel of that time.

Time will still stand still - but 10 hours will be 10 hours whether you're torturing yourself in the hospital or outside of it.

My heart absolutely goes out to you. This is every mother's worst nightmare.

Are you at Great Ormond Street by any chance? My daughter had major spinal surgery there. If it's this hospital feel free to pm me as I can give you some hints and tips for local walks/parks/shopping centre all within ten mins of the hospital x

We were at GOSH and we asked before surgery about updates. They were very clear, there will be none until it’s over. We asked the ward nurses to check and their system just showed “in progress”. We persuaded them to call the theatre after about 8 hours and were told, all going well, starting to close, another hour or so. It’s worth you asking as it may be different.
We went for a walk, mooched around Covent Garden, few bookshops. Lunch, walk then sat in Wetherspoons with free refills for ages. We got back at the earliest he could have been back and then had a 5 hour wait which was awful - we should have stayed out longer.
Then we heard he was on his way to recovery and we were taken there. The surgeon and anesthetist met there and updated us.
It will be a long day, will be thinking of you.

We went out during our son's surgery - walked around, went into some shops - totally surreal. But definitely get out and get some air & pass the time somehow. Time stands still inside the hospital if you're waiting.

Only shortish procedures for us at gosh but I agree with others try and get out and distract as much as possible, go to the cafe/park etc or time just stands still. Most times they called us to recovery, another time they just brought him back to us on the ward without calling as he was fast asleep so he wasn’t aware so just wheeled him to us. Sending you love xxx

I’ve no experience to offer but want to say how brilliant you are and it’s down to you that your son’s surgery hasn’t been delayed. It must be the most worrying of times but you have given your son the very best chance of recovery.
Thinking of you and your family and sending much love and positive vibes xx

So they think it will be around 14 hours surgery 😢 but he did say maybe longer .so will be very late at night , he will be put in hdu after so I can’t even wait on the ward if I wanted to (which I don’t ) so god knows I might find a local weather spoons or something and just sit in there for a while then sit downstairs or something for the evening , we’re not at gosh

If you are in Liverpool there is a Weatherspoons near Alder Hey Hospital, turn left as you come out of the front door and it’s a 5 min walk. There’s a park next door and some cafes close by.

We will all be with you tomorrow. How I wish things were different, but how glad I am that you reached out on here xxx

Could you get a hotel locally and have a walk and a meal, a shower and sleep? You'll need maximum distraction to cope with a 14 hour operation, the waiting is very hard.
Best of luck to you all

Edited to add i thought the surgeon was mad when he suggested we go out for the day. But in retrospect it was really good advice.

My son has had 5 surgeries and each time it was always longer than they initially told me it would be so don't be alarmed if that happens, even if it is a good few hours more than suspected.

My son was at LGI (Leeds). If your son is there, let me know and I can suggest a few things to hopefully keep you busy.

Going to HDU or even ITU is very normal after a very big operation, even when things have gone well and the surgeons are pleased with how the patient is doing. My DH was originally told he'd go to HDU after his 11 hour op, but his surgeon decided he'd rather send him to to ITU after so long in theatre. DH had one-on-one care from a lovely nurse who stayed close by all night and he was able to ring me. As children are more resilient than adults in some ways and less so in others, your DS's surgeon may decide that time in ITU with the additional monitoring and TLC that implies would benefit him. Wishing you and your DS all the best for tomorrow. 🍀

Agreed. If they try to move him, push the narrative that it's in his best interest to stay where he is to rest and relax as much as possible before his op tomorrow. Thinking about you all xx

I’m still reading this thread and thinking of you OP.

I have a sister and when her daughter was 10 months old she got very ill and had to be transferred to a hospital with ITU care. A few days after her admission, once all investigations were completed, she was booked in for surgery the following day, and my sister was told it would be a minimum of 10 hours.

We decided that I would go and spend the day with her in the hospital as we’ve always been close and we spend most of our time just having fun and laughing together. My sister had her own cubicle so once her daughter was taken to theatre we just shut ourselves away in there with all our favourite board games and films from when we were younger and spent the day eating lots of our favourite snacks and treats. She didn’t want to leave the hospital whilst the operation was happening so it was all about finding a way to keep her distracted and managing to put smiles on her face when we reminisced about our childhood. She shut her mobile away in the cupboard because she couldn’t face the barrage of texts/calls she was likely to get from well meaning friends and family asking her if she was ok etc etc. She just didn’t want to have to think about them or be reminded of what was happening.

Her daughter was gone about 13 hours in total as the “10 hours” guesstimate was just the operation time and did not include the time her daughter spent in the anaesthetic room prior to the surgery starting, or the time that her daughter spent in recovery after the operation.

It was a difficult 13 hours but my sister got through it her way, and you will find a way to get through it too.

My sister’s baby was in hospital for about 3 months in total (she needed further operations after the initial one) and as a previous poster had said, it just became my sister’s new normal. She also had a partner and another child (3 years old) back at home and being separated from them was another heartbreak but she somehow found a way to cope with that too. People have amazing resources of survival during periods of total crisis.

Reach out to anyone and everyone who wants to help because they’ll be wanting to support you through this in any way they can, even if it’s just in practical ways seeing as they can’t physically be with you to give you a hug and reassurance.

I’m so sorry this is happening to you OP, and I truly hope that by tomorrow night (or into the early hours of Tuesday) the tumour will have been removed because that will be a huge milestone. You and your son sound incredibly strong and with you by his side he will hopefully thrive in his recovery period.

I will be thinking of you and your son tomorrow, and his dad too as this is no doubt just as heartbreaking for him as well. No family deserves to go through this and I am wishing your son the very best of luck for tomorrow x

What hospital are you at OP? Maybe one of us could come along to support you tomorrow, spend some time doing anything to take your mind away from the op for a bit. Or even just be there for you to offload all your worries that you're scared to voice to anyone else, with no judgement and no negativity from our side. X

Try not to worry if the surgery takes longer than they say, it's doesn't mean anything is wrong, surgeon estimates can sometimes be a bit off. Add on an extra couple of hours in your mind.

If you can face getting out, do, but equally don't feel like you have to. I spent virtually all of it playing candy crush saga (took no thought/concentration but passed the time) in the parents room. Then to intensive care for the night for us.

There are no rights and wrongs here, it's just about tolerating the time passing. Things will be a LOT better in 48 hours. Even though we had lots of complications and things got pretty bad a few times, nothing compared with the night before surgery/surgery. You'll come out the other side. Thinking of you for tomorrow x

Try not to worry if the surgery takes longer than they say, it's doesn't mean anything is wrong, surgeon estimates can sometimes be a bit off. Add on an extra couple of hours in your mind.

If you can face getting out, do, but equally don't feel like you have to. I spent virtually all of it playing candy crush saga (took no thought/concentration but passed the time) in the parents room. Then to intensive care for the night for us.

There are no rights and wrongs here, it's just about tolerating the time passing. Things will be a LOT better in 48 hours. Even though we had lots of complications and things got pretty bad a few times, nothing compared with the night before surgery/surgery. You'll come out the other side. Thinking of you for tomorrow x

Please check if they mean 14 hours after you leave him in anaesthetic room or 14 hours from when surgery starts.
Ask the nurses where you can wait in hospital, I’m sure there will be somewhere for parents waiting for a long time.

In our experience (DC brain tumour removal, extremely long surgery due to closeness to brain stem) the anaesthetist called us as DC was being stitched up, so maybe after about ten or eleven hours? She was great and told us the tumour was removed and DC was doing well. It was another hour at least, maybe two, before I was able to go down to recovery and see him.

I would advise leaving the hospital and busy yourself as far as possible - maybe buying the things he might need when he is recovering. Also make sure you let everyone know he surgery is long and you won't know anything til later, just in case people keep messaging.