Page 6 | Need a massive handhold. Ds has collapsed lung and portable rare syndrome

MoSalahsBeard · 2025-08-17T16:55:46+00:00

Posting here so I can cry and rant to someone because it’s just me and ds in the hospital at the moment. it all happened on Friday night, and yesterday am we found out he has a spontaneous collapsed lung. Now being moved elsewhere for a chest drain. They’ve also found a heart murmur and that is aorta is an unusual shape which points to a syndrome, along with other things, the syndrome causes eye problems, heart problems and spine problems. I’m so sad but I can’t cry in front of him. I keep welling up and having to swallow it down. He’s 14 and already had a lot of health issues and neurodiversity to deal with. It isn’t fair.

begone25 · 20/08/2025 07:10

I hope you all got some sleep last night. Which hospital are you in? I’m sure your friend will be happy to just drop bits off for you (and give you a quick hug!) There might even be M’netters who could drop off a pack of knickers! Or tell you the easiest place nearby to get stuff. Sending best wishes to you all x

everythingthelighttouches · 20/08/2025 08:05

As the mother of a son who was in NICU for 7 weeks (really scary and constantly changing, life-threatening emergencies), followed up by years of surgeries and a few more unexpected serious issues thrown in for good measure, I could not read this and not respond.

I can feel your overwhelming love, worry and anxiety through the pages of Mumsnet and I’m here to tell you,

You have absolutely got this!

You are about to surprise yourself at how strong you are, and you will support your son tremendously well. And because of this, he is going to do really well and surprise you too.

A few thoughts and bits of advice :

Rest (I won’t say sleep, but you must try). If he’s in for a while, you are going to have to go home and lie on your bed, even if you hate it.

Crying is good, natural, normal. Doctors and nurses see it all the time and are well used to dealing with it and supporting you.

Paediatric nurses are great at regulating you, so you have a little cry, then go back to all the practical support you are going to have to give your son by being there for him.

Not everyone cries and that’s fine too. So for example, if your DH doesn’t, that’s his way and one of the hardest things is to mutually support eachother even if you can’t understand eachother in this extreme situation.

Let friends/family visit. They don’t need to be on the ward and will gladly come up to the hospital just to meet you in the car park/coffee shop for a good hug and chat (maybe a bit more crying if you fancy it?!). They are there to support you, so you can support your son.

Accept help (knickers and all!)

Call the Marfan trust.
You’ll feel empowered that you did something to get support outside of the ICU, where you feel you have no control.

Drink water like it is your profession. Sounds weird but It is unbelievable how dehydrated you can get glued to a child’s bed on a hospital ward.

Hope today goes well, I’ll be thinking of you.💐

Original poster

MoSalahsBeard · 20/08/2025 16:54

He looks a bit better today and with the physio’s help he has managed to get out of bed to move around a tiny bit as that apparently helps.

sadly the cardiologist came to see us today and said that there is a problem with his aorta so they need to start him on heart medication. He won’t be able to do most sports anymore and has to take it easy. Thankfully his main hobbies aren’t too impacted but I know he will find it tough in time that he can’t play football with his mates and has to sit out PE. Obviously the main thing is keeping him alive but he’s already suffered so much from being bullied over his tall thin frame and now he’s going to have to avoid a lot of things too and take life very easy. I’m worried how it will all affect him mentally.

I still can’t believe this has all happened and I’m veering between incredibly sad, exhausted, drained and ok at times. I’m on the train home alone to grab more clothes for us all- it feels really sad returning home without him after all this to an empty house knowing they’re both still at intensive care. That probably makes no sense. I dunno I’m just so drained and emotional. My brain feels like a numb black hole

OP posts:

TheLivelyViper · 20/08/2025 17:03

MoSalahsBeard · 20/08/2025 16:54

He looks a bit better today and with the physio’s help he has managed to get out of bed to move around a tiny bit as that apparently helps.

sadly the cardiologist came to see us today and said that there is a problem with his aorta so they need to start him on heart medication. He won’t be able to do most sports anymore and has to take it easy. Thankfully his main hobbies aren’t too impacted but I know he will find it tough in time that he can’t play football with his mates and has to sit out PE. Obviously the main thing is keeping him alive but he’s already suffered so much from being bullied over his tall thin frame and now he’s going to have to avoid a lot of things too and take life very easy. I’m worried how it will all affect him mentally.

I still can’t believe this has all happened and I’m veering between incredibly sad, exhausted, drained and ok at times. I’m on the train home alone to grab more clothes for us all- it feels really sad returning home without him after all this to an empty house knowing they’re both still at intensive care. That probably makes no sense. I dunno I’m just so drained and emotional. My brain feels like a numb black hole

That's great he's feeling better. Ask about many someone from psych (if they're not too busy) - coming to talk to him about the mental health impacts of finding out you have a chronic condition and how it can change everything in your life. See about some basic counselling as he adapts - maybe psychodynamic. Maybe ask about early mental health professional.

Pancakeflipper · 20/08/2025 17:07

Oh you... I'm sorry it's a mix of news and new worries to take in.

Hopefully the medication for his heart will help and hopefully new developments in medicine will help him have a full lifestyle.
It's so hard when they have already faced battles in life, that they have to face more that their peers don't have. It's just not fair.

Hope there's lots of fresh clean knickers in your drawer and you get chance to grab a decent shower at home.

And it's OK to feel numb, it's your body coping with having to do practical stuff, do the cheery face for your boy and being worried to hell inside. You are doing amazingly.

Someone2025 · 20/08/2025 17:08

MoSalahsBeard · 20/08/2025 16:54

He looks a bit better today and with the physio’s help he has managed to get out of bed to move around a tiny bit as that apparently helps.

sadly the cardiologist came to see us today and said that there is a problem with his aorta so they need to start him on heart medication. He won’t be able to do most sports anymore and has to take it easy. Thankfully his main hobbies aren’t too impacted but I know he will find it tough in time that he can’t play football with his mates and has to sit out PE. Obviously the main thing is keeping him alive but he’s already suffered so much from being bullied over his tall thin frame and now he’s going to have to avoid a lot of things too and take life very easy. I’m worried how it will all affect him mentally.

I still can’t believe this has all happened and I’m veering between incredibly sad, exhausted, drained and ok at times. I’m on the train home alone to grab more clothes for us all- it feels really sad returning home without him after all this to an empty house knowing they’re both still at intensive care. That probably makes no sense. I dunno I’m just so drained and emotional. My brain feels like a numb black hole

Glad to hear there is some improvement

Its sad to hear that he has to lay off playing sports but there are still some low intensity things that he can probably do if you get him into it and it may get him to socialise with a different crowd outside of the school bullies eg, Archery, golf, shooting, table tennis, curling, bowling, recreational alpine skiing, swimming

Golf is especially popular with teenage boys now and membership fees are quite low for their age group, the clubs also provide the clubs for them to play with in a lot of instances or otherwise there are usually a lot of second hand ones online

Hope he continues to improve, poor lad🥰

BlackeyedSusan · 20/08/2025 17:19

That's shit. Very worrying for you.

lifeisgoodrightnow · 20/08/2025 17:23

MoSalahsBeard · 20/08/2025 16:54

He looks a bit better today and with the physio’s help he has managed to get out of bed to move around a tiny bit as that apparently helps.

sadly the cardiologist came to see us today and said that there is a problem with his aorta so they need to start him on heart medication. He won’t be able to do most sports anymore and has to take it easy. Thankfully his main hobbies aren’t too impacted but I know he will find it tough in time that he can’t play football with his mates and has to sit out PE. Obviously the main thing is keeping him alive but he’s already suffered so much from being bullied over his tall thin frame and now he’s going to have to avoid a lot of things too and take life very easy. I’m worried how it will all affect him mentally.

I still can’t believe this has all happened and I’m veering between incredibly sad, exhausted, drained and ok at times. I’m on the train home alone to grab more clothes for us all- it feels really sad returning home without him after all this to an empty house knowing they’re both still at intensive care. That probably makes no sense. I dunno I’m just so drained and emotional. My brain feels like a numb black hole

They can do a repair which hopefully can be done through the groin of the aorta but they won’t be floating that st the minute until he’s well and stable x

lifeisgoodrightnow · 20/08/2025 17:23

A repair of the aorta through the groin, i mean .

Kirbert2 · 20/08/2025 17:39

MoSalahsBeard · 20/08/2025 16:54

He looks a bit better today and with the physio’s help he has managed to get out of bed to move around a tiny bit as that apparently helps.

sadly the cardiologist came to see us today and said that there is a problem with his aorta so they need to start him on heart medication. He won’t be able to do most sports anymore and has to take it easy. Thankfully his main hobbies aren’t too impacted but I know he will find it tough in time that he can’t play football with his mates and has to sit out PE. Obviously the main thing is keeping him alive but he’s already suffered so much from being bullied over his tall thin frame and now he’s going to have to avoid a lot of things too and take life very easy. I’m worried how it will all affect him mentally.

I still can’t believe this has all happened and I’m veering between incredibly sad, exhausted, drained and ok at times. I’m on the train home alone to grab more clothes for us all- it feels really sad returning home without him after all this to an empty house knowing they’re both still at intensive care. That probably makes no sense. I dunno I’m just so drained and emotional. My brain feels like a numb black hole

What you are feeling is incredibly normal. Take it minute by minute if you have to.

Your son will have some days where he is angry with the world. My son became physically disabled due to complications from an illness, he was a bit all over the place at first but almost a year and a half later, has largely come to terms with it. He did see a psychologist weekly in the hospital for a while and the play team were really good with him as well, though I appreciate your son is older. My son was 8 at the time and is 9 now.

As for PE, they will include him as much as they can. My son can't do a lot but they adapt things as much as they can to include him when possible.

It's amazing how brave and strong children can be during such difficult situations.

YanTanTetheraPetheraBumfitt · 21/08/2025 17:48

How’s he doing today?

Original poster

MoSalahsBeard · 21/08/2025 20:31

YanTanTetheraPetheraBumfitt · 21/08/2025 17:48

How’s he doing today?

Well they’ve clamped the drain and so far no escaping air or chest pain. They’re doing another x ray to check in the morning how it looks. He tried to go for a short very shaky walk with his drain earlier and threw up unfortunately. He’s starting heart medication tomorrow

OP posts:

YanTanTetheraPetheraBumfitt · 21/08/2025 21:50

Fingers crossed the heart meds make a difference.

x2boys · 21/08/2025 22:10

MoSalahsBeard · 21/08/2025 20:31

Well they’ve clamped the drain and so far no escaping air or chest pain. They’re doing another x ray to check in the morning how it looks. He tried to go for a short very shaky walk with his drain earlier and threw up unfortunately. He’s starting heart medication tomorrow

Show quote history

He will be it's taking it's toll on his body ,my son was very weak when he was discharged. From ICU and he had lost a lot of weight
You wouldn't know it now though more than two years on.

nocoolnamesleft · 21/08/2025 23:20

If he’s coping with the drain clamped that’s real progress. I hope the cardiologists have a good plan for his aortic root. In a really weird way it’s an accidental benefit of this whole nightmare you’re going through, that the pneumothorax has led to the heart side of things being diagnosed, so this can be addressed properly before it ever caused him a problem. Keeping fingers crossed for you.

Kirbert2 · 21/08/2025 23:21

x2boys · 21/08/2025 22:10

He will be it's taking it's toll on his body ,my son was very weak when he was discharged. From ICU and he had lost a lot of weight
You wouldn't know it now though more than two years on.

Show quote history

Yep.

My son was in PICU for 7 weeks, he was on a ventilator and dialysis for the first 4 weeks and he lost so, so much weight. If I remember rightly, he was 21kg at his lowest at 8 years old.

We're approaching 18 months since he was first admitted to PICU and he's now 31kg+, he does now have a physical disability due to complications with his illness which caused his PICU stay but nothing to do with his actual PICU stay. Even then, you wouldn't know how poorly and weak he was just 18 months ago.

Pancakeflipper · 22/08/2025 17:45

Hoping today has been positive for you.

Some of the experiences I'm reading on here - well it's emotional.

Gymnopediegivesmethewillies · 26/08/2025 19:06

How is your son @MoSalahsBeard ? And how are you holding up?