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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:
Are your children’s vaccines up to date?
Tholeonagain · 07/03/2025 21:31

Sweetheart I’m near Kingston on Thames if any good. Thinking of you very much xx

Pearl97 · 07/03/2025 21:37

the love here is wonderful. Please do reach out if people can help. It’s actually what MN is amazing at.
xx

0psiedasiy · 07/03/2025 21:38

I’m in notts/derbys if I can help I will shopping/washing/driving you. Just shout if your near me and if I can help I will

nocoolnamesleft · 07/03/2025 21:48

Fingers firmly crossed for the results of today's scan.

Bunnybear42 · 07/03/2025 21:50

OP please do share your location - you need lots of help and support as your family aren't close by, particularly as you have a toddler to consider - it's even more work and worry for you and your DH as you can't be together as much to support each other. You don't need to worry about washing and finding/making food etc. Time away from your precious DS should be sleeping/ exercising/ trying to relax/ showering and playing with your little one which I'm sure is much needed therapy for all of you.
It will be long haul and I'm so sorry it's a heartbreaking situation, I truly hope you get better news and a plan of action in the coming weeks. X

Somuchgoo · 07/03/2025 21:54

If the OP wanted to share her location she would have by now. Maybe we should stop nagging her for this. Some people would be happy at a total randomer coming along to help, others, although grateful for the sentiment would hate it.

RosesAndHellebores · 07/03/2025 22:07

I have been thinking of you @YourRubyMaker. With love x

ExitPursuedByABare · 07/03/2025 22:26

I was in hospital miles from home for 5 weeks. Several people I know only virtually offered to come and bring me stuff and I couldn’t think of anything worse.

Zone2NorthLondon · 07/03/2025 22:27

LegoInfestation · 07/03/2025 15:01

You never need to feel the need to apologise to people here for not updating. Use MN as a resource for when you have the time and when you can benefit from communicating here.

That's brilliant that you are out of ICU and that your DS has been able to have some time off the ward using the wheelchair. I think it's so valuable to have a change of scenery when you can.

I can only start to imagine everything you've been through. I'll echo my message on my first thread. Do what you can to look after yourself a bit. Ask friends to help. I had close friends/family come and sit with DD so I could get away for a bit. I'd thought DD would miss me but she enjoyed fresh company too at times. I know it's really hard to peel yourself away though.

Sending all the positivity possible in your direction. Keep plodding on 💐

that is a lovely thoughtful message

Lougle · 07/03/2025 22:43

@YourRubyMaker I used to be a nurse in neurosurgery and ICU (at different times!). Noise on the ward is infuriating. It shouldn't be noisy and the nurses should be managing the noise. They should also have eye masks and ear plugs available, although that isn't always easy after brain surgery.

SlightlyJaded · 07/03/2025 22:48

That sounds really tough OP. You must be exhausted.
Brilliant that he got through the first surgery okay - you just need to keep moving forward in baby steps. Think about plans in terms of hours rather than days. What could you try and achieve in the next hour? (eg: something to eat/10 mins quiet time) etc. At this stage everything is moving so fast and so unpredictable that it can be hard to plan a whole day and expect it to play out

You are doing amazingly. Keep going - your DS couldn't do it without you - your love, care and attention is keeping him going as much as the medical interventions. Hold that thought when you are feeling (understandably) pissed off by families in less extreme circumstances making a racket, or frustrated by the two steps forward, one step back.

Thinking of you and your whole family several times a day. Everything crossed for progress.

AMurderofMurderingCrows · 07/03/2025 22:54

I'm so sorry you're going through this terribly tough time. Thinking of you, your boy and family ❤️

NinaNina83 · 07/03/2025 23:01

I'm in Leeds if by any chance you're at LGI.. happy to help in any way I can x

PrincessAnne5Eva · 07/03/2025 23:06

Sending unmumsnetty hugs. 💐

BellaVita · 07/03/2025 23:12

Sending you all my love.

My boy has a GMB4 and has had two craniotomy’s.
After his first one, he had swelling, but with the aid of steroids it did reduce and settle down. Your boy is in the best place.

We are also under LGI and St James. If you need anything at all, please just ask ❤️ xx

friskybivalves · 07/03/2025 23:12

Hoping you manage some semblance of sleep at some point Daffodil

Needapadlockonmyfridge · 07/03/2025 23:40

Op I have been hoping for good news, so pleased to see your son is out of ICU..
I hope the scan results are good, and no op required.
Continuing to hold your son in my thoughts x

DarkMagicStars · 07/03/2025 23:48

It doesn’t seem right that he’s expected to go from ICU to a ward with kids having their tonsils out.
I would have thought having major surgery would warrant a side room. Can you push for one?

Somuchgoo · 07/03/2025 23:52

DarkMagicStars · 07/03/2025 23:48

It doesn’t seem right that he’s expected to go from ICU to a ward with kids having their tonsils out.
I would have thought having major surgery would warrant a side room. Can you push for one?

They probably need to keep a closer eye on him than a side room would allow - often curtains can't even be shut because they need eyes on the patient at all times. It's not ideal though so he should really be in either high dependency or kids neuro (often staffed with a ratio 1:2).

Beeloux · 08/03/2025 00:20

Oh OP I’m so sorry, what an awful situation for yourself and ds. 😞You’re both in my thoughts.Flowers I hope they give you both a private room.

marena1 · 08/03/2025 00:42

I'm so sorry for your shitty situation OP. Very loved relatives with long stays in hospital are seriously hell. Just a thought as you probably have, but have you spoken to the hospital social worker. She was one of the most helpful people to me with a loved one in hospital for 2 years. There should be charities she can refer you to for childcare , sitting with your sick child and meal delivery, or just adding you to the hospital food list ( dire I know but better than nothing). It's different everywhere obviously but worth a shot. It just totally sucks though and best wishes for the best outcome.

coxesorangepippin · 08/03/2025 01:07

So sorry about all this, what an horrendous situation for you all

Thinking of you all lots

Normallynumb · 08/03/2025 01:51

I'm so glad he's out of ICU but sorry to hear what you're enduring to be with him

Difficultwill · 08/03/2025 02:39

So pleased that the first operation went well. There will be two steps forward one step back. Please do try and look after yourself. We are all thinking about you and your son and family. Sending virtual hugs

Dontsparethehorses · 08/03/2025 06:16

Been thinking and praying for you all week. If your Notts/Derby or even Leicester way I’m happy to help

hope you manage to swap - my dd was very premature and I had a tricky 2 year old and the juggle was hard. But most importantly you get some rest. Be kind to yourself each day and one step at a time