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Original poster

Out of my mind with worry part 2

374 replies

YourRubyMaker · 07/03/2025 14:51

for anyone who was on the original thread sorry it’s been a hectic few days . Intensive care was horrific he kept trying to wake up and pull his ventilator out his bp was unreal so they kept having to sedate him ,. Managed to get back onto the ward on Tuesday, weds a blur but yesterday was really positive he got his own wheelchair and managed some light physio,. Today we’ll back to shit really we had planned to leave the ward for the first time and have dinner in the onsite canteen he’s since been sick and his heads swollen,. Waiting to see if he’s gonna get an emergency scan or not , just feel like it’s a rollercoaster and as soon as you think you’re getting somewhere you don’t . Still waiting on biopsy results which won’t be until next week , toddler is so unsettled won’t leave dh alone which is making life really hard as I can’t leave ds but need to go do washing etc , it’s a nightmare

OP posts:
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IncessantNameChanger · 13/03/2025 00:09

OP look up your local carers group ( it's a hard thing to accept but ds carer now). And ask then to help you to fil in a DLA claim. Ds now needs more health visits and more care than a child of his age and you should apply for DLA. It takes ages to process but will pay for parking, pay for your extra care costs. Please do look into this

Lilactimes · 13/03/2025 07:34

Dear @YourRubyMaker

There are so many wonderful words of advice and experience on this thread which I hope are helping you a bit.
I just really wanted to say how pleased I am your son’s tumour was benign and that you’re back in your home. You are one impressive person and an incredible advocate for your son. You have been constantly in my thoughts this past two weeks.
i really hope you get help and support in real life and some time to rest. I also hope your DH can get a bit more time off work too - the immediate physical impact on you all must be huge. I’m sure your toddler will also settle down after some sleep at home.
Sending much love and support to you xxx

MrsOvertonsWindow · 13/03/2025 13:18

Another one just registering how pleased I am to hear that you're home. It'll be a rough ride at times no doubt but hopefully you'll be able to access support - including of course from so many parents on here.
Flowers

Sassybooklover · 13/03/2025 14:18

You might benefit from contacting Headway, they are a charity that specialises is helping people who have had a brain injury and their families. Having a brain tumour, regardless if benign or not, would be classed as a brain injury. The brain is amazing and can heal, but there may be things your son struggles with, especially the emotional side. I don't know, but they may offer counselling. If you work, then your employer may offer an Employee Assistance Program, where you can access counselling. Sending you all much love ❤️

Bluebunny123 · 13/03/2025 15:54

So glad to hear you are home, absolutely agree that this needs to be raised with the GP!

Flabuary · 13/03/2025 18:28

OP I’m in awe of you. My head would have completely fallen off, and I’d be in a corner, rocking back and forth but I guess, as mums(and dads) we just power join my tiny premature baby had RSV at only 5 weeks old, was convinced we were going to lose him. But somehow mustered the strength to just be ‘there’ even if only in body, not mind.
keep going op. You’ve got this xxx

Original poster
YourRubyMaker · 13/03/2025 20:21

Thank you for all your lovely messages he’s doing great we had some visitors today which was lovely but has tired him out , it really perked me up but I had to leave the house and go to the shop and it made me feel so paranoid and I actually feel really weird about leaving the house 😞 was dreading bumping into someone I knew that didn’t know what had happened and them asking casually how I was etc

OP posts:
Lilactimes · 13/03/2025 20:34

YourRubyMaker · 13/03/2025 20:21

Thank you for all your lovely messages he’s doing great we had some visitors today which was lovely but has tired him out , it really perked me up but I had to leave the house and go to the shop and it made me feel so paranoid and I actually feel really weird about leaving the house 😞 was dreading bumping into someone I knew that didn’t know what had happened and them asking casually how I was etc

Gosh … what an incredible difference for you from two weeks ago. So glad you’ve had visitors and a positive day. Hope you have a lovely weekend and start to feel more rested X

Castlereagh · 13/03/2025 20:39

Pleased to hear he is home and tumour is low grade. The charity CBIT are very helpful for children with a brain injury including brain tumours, they can help advise school re fatigue and lots of other things including failures in medical care previously. Look up Child Brain Injury Trust online. DLA cannot be applied for until three months after the condition has been diagnosed.

Dodgyshoulder · 13/03/2025 21:54

You are an amazing advocate for your son and I’m glad to hear he is home and recovering. Well Done to you all x

Slavetomycat · 13/03/2025 22:05

YourRubyMaker · 13/03/2025 20:21

Thank you for all your lovely messages he’s doing great we had some visitors today which was lovely but has tired him out , it really perked me up but I had to leave the house and go to the shop and it made me feel so paranoid and I actually feel really weird about leaving the house 😞 was dreading bumping into someone I knew that didn’t know what had happened and them asking casually how I was etc

that makes such sense. You are traumatized and the idea of recounting the whole story must be horrific. Don’t feel like you have to relate it all, or indeed any of it, until you are ready. You’ve been to hell and back - thank goodness you are back.

Changed18 · 13/03/2025 22:30

Inevitably, you will bump into someone who doesn’t know and asks how you all are. Might be as well to have an idea of what you might say when that happens.

You could just say DS hasn’t been well but is on the mend, without giving lots of details if it’s too upsetting in the moment. Or that he’s been in hospital but is out now and then have to rush off. You could always follow up with a WhatsApp that you only need to write once.

For me, it was easier when people already knew something was wrong than when they had no idea.

Good that you’re settled back home and have started seeing friends.

EdithBond · 14/03/2025 08:25

Agree. Repeatedly recounting traumatic events can retraumatise people. Though sometimes saying it enough times can help. Just depends.

If it were me, I’d say my son had a complex op to remove a brain tumour. But he’s on the mend now and don’t want to talk about it, as too raw. Be firm. You need to go at your own pace, not other people’s.

When my son has on the mend in hospital, lots of people wanted to visit, but we had to limit it, because it really wore him out. So, be firm with visitors too. They shouldn’t stay too long, unless you want them to, e.g. to help out.

Kirbert2 · 14/03/2025 11:45

YourRubyMaker · 13/03/2025 20:21

Thank you for all your lovely messages he’s doing great we had some visitors today which was lovely but has tired him out , it really perked me up but I had to leave the house and go to the shop and it made me feel so paranoid and I actually feel really weird about leaving the house 😞 was dreading bumping into someone I knew that didn’t know what had happened and them asking casually how I was etc

You don't have to go into details if you don't feel like it. You can just say something like he's been unwell but he's at home now and getting better etc or you can just say ''not bad thanks, you?'' and not talk about it at all.

SlightlyJaded · 14/03/2025 15:14

YourRubyMaker · 13/03/2025 20:21

Thank you for all your lovely messages he’s doing great we had some visitors today which was lovely but has tired him out , it really perked me up but I had to leave the house and go to the shop and it made me feel so paranoid and I actually feel really weird about leaving the house 😞 was dreading bumping into someone I knew that didn’t know what had happened and them asking casually how I was etc

Yay for visitors.

I remember that feeling of not wanting people to ask how things were, when something happened in our family. Whilst my closest friends and family only wanted to be supportive, I always had a feeling that for casual friends, my 'news' was just fodder for a bit of horrified gossip and faux distress. That sounds horrible - I'm sure they cared a bit - but there was always the concern was a bit gratuitous. I might have been wrong, but that's how I felt.

To be honest, I found that shutting down any conversation was the way to go for me. So in response to a casual 'How are things?' I would reply 'Pretty difficult actually, and I'd rather not go into it'. Or something like that. No details at all - no space for people to dig deeper or ask probing questions. And then smile and move along. Don't worry about being polite or pressured into sharing.

ThisFluentBiscuit · 14/03/2025 23:56

@YourRubyMaker I'm so glad you're home and that things seem to be progressing in the right direction. What an incredibly brave little boy you have!

I hope all those doctors who dismissed you before are hanging their heads in shame. Size of a peach and only just caught in time! What a disgrace.

Lougle · 15/03/2025 06:40

Castlereagh · 13/03/2025 20:39

Pleased to hear he is home and tumour is low grade. The charity CBIT are very helpful for children with a brain injury including brain tumours, they can help advise school re fatigue and lots of other things including failures in medical care previously. Look up Child Brain Injury Trust online. DLA cannot be applied for until three months after the condition has been diagnosed.

DLA can be applied for 3 months after symptoms started. So if @YourRubyMaker's DS had qualifying symptoms, an immediate claim could be made. But if his symptoms only qualify once the tumour was resected, then yes, the three month period would kick in. I have a relative who had symptoms for months before diagnosis, so they were able to claim DLA immediately.

@YourRubyMaker I'm glad you had visitors. Take it all step by step.

Sunshine1500 · 15/03/2025 09:32

Ive just read your first thread through tears.. it was so difficult to read I can’t imagine how hard it must be for you. Sending lots of positive thoughts, you’ve been an amazing mum! Hope the recovery goes well for your son ❤️

Loreli1983 · 16/03/2025 14:53

I've just come across your updated thread. I am so pleased that things are going in the right direction. I have been thinking about you all. X

Original poster
YourRubyMaker · 19/03/2025 08:03

im really not coping keep having waves of panic attacks , gp came to ‘help’ but have found it more of a hindrance tbh , toddler needs to be with us at all times or is hysterical and I attempted a dinner out only 5 mins walk and couldn’t handle it

OP posts:
Original poster
YourRubyMaker · 19/03/2025 08:05

Keep waking up in the night in panic also

OP posts:
WatchOutMissMarpleIsAbout · 19/03/2025 08:07

It’s early days. I’m not surprised you are waking up in a panic. You have had a life changing event, it will take time for you to feel yourself.

Changed18 · 19/03/2025 08:10

I think this may be a completely normal reaction to a period of intense stress for you all, OP. Maybe a mindfulness app would help give you a way to switch off briefly? Being back in their routine, where they know what to expect, will probably be very helpful for your toddler. Time really is a healer.

MrsOvertonsWindow · 19/03/2025 08:28

It's not surprising that you feel so stressed OP - what you've been through as well as parenting a toddler as well as caring for an unwell child must be so difficult.
Is there anyone you could ask for a bit of help from? Whether it's practical help with shopping, distracting the toddler for a while, cooking a meal or anything that you'd feel helpful?

Jasmine222 · 19/03/2025 08:30

YourRubyMaker · 19/03/2025 08:03

im really not coping keep having waves of panic attacks , gp came to ‘help’ but have found it more of a hindrance tbh , toddler needs to be with us at all times or is hysterical and I attempted a dinner out only 5 mins walk and couldn’t handle it

It's normal hun, go easy on yourself and it'll pass gradually. Your toddler's reaction is also normal ❤️ and will also pass.