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Original poster

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

143 replies

MoSalahsBeard · 17/08/2025 17:55

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.

OP posts:
Pancakeflipper · 19/08/2025 06:52

Hoping you've had some sleep.
And hoping today there's a plan of action and all goes well.

Remember to try and keep drinking (just little sips will do!) And to eat, even if it's just a few crisps. And get some fresh air, even though you'll not want to leave your boy.

Virual hand hold.

Munchyseeds2 · 19/08/2025 07:33

I hope things start to improve today for him,
I'm sure they will

YesHonestly · 19/08/2025 10:08

I hope you’ve managed some rest OP.

One thing I will say from experience is that in situations like this, when it is an emergency or ICU is needed, the NHS is incredible. Your son is in the best hands, and I hope things feel a bit lighter this morning and your son is stable and starts to turn a corner.

Sending love x

x2boys · 19/08/2025 10:37

YesHonestly · 19/08/2025 10:08

I hope you’ve managed some rest OP.

One thing I will say from experience is that in situations like this, when it is an emergency or ICU is needed, the NHS is incredible. Your son is in the best hands, and I hope things feel a bit lighter this morning and your son is stable and starts to turn a corner.

Sending love x

Yes I agree there for all we slate the NHS i couldn't fault the care my son received in intensive care they were amazing
Your son is in the best possible place Op

dontforgetme · 19/08/2025 11:22

Thinking of you all this morning op. Sending love to your and your lad x

Sodastreamin · 19/08/2025 11:28

my DD’s Dad has Marfans and as an adult it doesn’t affect him. He’s had two collapses as a teen (none as a kid) and nothing since so I honestly wouldn’t worry too much about the long term affects, although everyone is affected differently.

DaffodilsInAJamjar · 19/08/2025 12:06

Thinking of you, OP. Having a very poorly child in hospital is terrifying, I’m so sorry you find yourself in this situation. One thing that helped me was the Faith room in our hospital. I’m not an especially religious person, but I spent a lot of time in there crying. It helped me to have somewhere private, away from my child and the ward, to let it all out. I also found that the walk to the faith room and back helped me cope. Something about the movement and the chance to “be” elsewhere for a brief period of time.

Apologies if this is way off the mark for you. Thinking of you and your son.

Original poster
MoSalahsBeard · 19/08/2025 12:10

PinkZebraStripes · 19/08/2025 00:43

Didn't want to read and run. I'm not sure whether collapsed lung is a symptom of Marfans, or related to his being tall and slim (which is a risk factor for collapsed lung), but just wanted to say, I've had a 50% collapsed lung - it's not pleasant having a drain fitted but a collapsed lung is always fixable which is one positive thing in the tsunami you have going on.

The lung can heal itself, 5 days is usually the timeframe they give.

I accidentally pulled my first one out, they did another, so I was around 9 days with a drain.

If it's doesn't resolve (or comes back) they may consider surgery. I had a short keyhole surgery and they did a talc pleurodesis which is a sterile talc in the lung cavity, to make the lung puff up and then it adheres to the inside of the lung wall, it's something like 95% effective against another collapse. Mine has not collapsed again in nearly 10 years. There's another kind of surgery called a mechanical pleurodesis where they manually make the outside of the lung rough so that it sticks to the lung wall.

There's a Facebook group called Spontaneous Pneumothorax if helpful on that side of things.

Edited

Seems like he will be having a talc pleurodysis too from what they said this morning. The lung is draining ok at the moment but there is a leak they need to fix. Hes very freaked out by what’s happened and the tube coming out of his chest, so they’re going to give him something to calm him down.

the hospital have given us a double room 2 floors up so we can sleep here tonight and then we are going to have to tag team staying with him as we are out of clothes and stuff. My very kind friend has asked if I want anything brought up but we are 45 miles from home and I can’t bear to ask her to get knickers out for me!

OP posts:
FlayOtters · 19/08/2025 12:17

MoSalahsBeard · 19/08/2025 12:10

Seems like he will be having a talc pleurodysis too from what they said this morning. The lung is draining ok at the moment but there is a leak they need to fix. Hes very freaked out by what’s happened and the tube coming out of his chest, so they’re going to give him something to calm him down.

the hospital have given us a double room 2 floors up so we can sleep here tonight and then we are going to have to tag team staying with him as we are out of clothes and stuff. My very kind friend has asked if I want anything brought up but we are 45 miles from home and I can’t bear to ask her to get knickers out for me!

Show quote history

oh my gosh please please if someone has offered help take them up on it. I'm sure they've seen knickers before and they wouldn't have asked if they didn't mean it x

EineReiseDurchDieZeit · 19/08/2025 12:19

Wishing you all the best OP - I’m sure your friend wouldn’t blush at getting you some knickers Flowers

YesHonestly · 19/08/2025 12:22

I’m very sure if the situation were reversed you wouldn’t think twice about getting your friend some knickers!

Accept the help x

Squirrelsnut · 19/08/2025 12:35

I would be so glad to.help a friend in this situation, knickers and all! Please let her help you.x

Littlefish · 19/08/2025 12:36

YesHonestly · 19/08/2025 12:22

I’m very sure if the situation were reversed you wouldn’t think twice about getting your friend some knickers!

Accept the help x

I completely agree. I’m sure @MoSalahsBeard‘s friend would be glad to help and would welcome the opportunity to make things easier.

Matildatoldsuchdreadfullies · 19/08/2025 13:08

If you don't want your friend in your underwear drawer (which I do understand - and I'm sure she will too), is there a nearby shop that she could pick up a packet from?

YanTanTetheraPetheraBumfitt · 19/08/2025 13:12

The hospital may well have a shop where you can buy stuff like knickers - I mean they might be big granny pants but in an emergency they will do. There;s often toiletries and nightwear, etc.

lifeisgoodrightnow · 19/08/2025 13:13

MoSalahsBeard · 18/08/2025 21:08

Not sure if anyone is still here but things have got worse. His lung has collapsed more and intensive care are getting involved. I am falling apart. Constantly shaking and crying. He is going to die I know it

No. No he’s not. They’d be preparing you for that not still trying to treat. They’ve a lot of stuff the can do yet to help this. My son was in intensive care for three weeks on mechanical breathing and you’d never know now. 6ft 8 brick you know what house and adorable . Your son is young and strong and loved all things which go massively in his favour. Please contact the Marfan trust xx

Kirbert2 · 19/08/2025 15:54

x2boys · 19/08/2025 10:37

Yes I agree there for all we slate the NHS i couldn't fault the care my son received in intensive care they were amazing
Your son is in the best possible place Op

Show quote history

Same here.

He was in PICU for 7 weeks. His care was amazing, they saved his life against all of the odds.

Original poster
MoSalahsBeard · 19/08/2025 16:28

I agree about the staff, I could hug the guys here. A consultant just played Ds at Mario kart on a Nintendo switch that some of the kind staff got for him. They’ve been so patient and kind about the pain he’s in and his stress levels.

OP posts:
Kirbert2 · 19/08/2025 16:59

MoSalahsBeard · 19/08/2025 16:28

I agree about the staff, I could hug the guys here. A consultant just played Ds at Mario kart on a Nintendo switch that some of the kind staff got for him. They’ve been so patient and kind about the pain he’s in and his stress levels.

I'm glad to hear that they are taking such good care of him.

Don't be afraid to keep telling them if your son is in pain, they will have a pain team to be sure that he's comfortable but you know him best and sometimes I had to tell the pain team that I felt like he needed some more medication for the pain. They are generally really good at listening to parents.

Have a chat with the family support worker too, the one I had was so kind and supportive, she really lifted me up during the scary times with my son and they are also really knowledgeable about PICU too and can explain things when it all seems so scary and clinical.

You've got this xx

Sunshineandrainbow · 19/08/2025 17:31

MoSalahsBeard · 19/08/2025 16:28

I agree about the staff, I could hug the guys here. A consultant just played Ds at Mario kart on a Nintendo switch that some of the kind staff got for him. They’ve been so patient and kind about the pain he’s in and his stress levels.

I adore little snippets like this. Shows them with such thought and kindness.

fussychica · 19/08/2025 18:10

DS had this during freshers week at a university at the other end of the country. Despite trying for a number of days they were unable to reinflate the lung and he was in terrible pain so he was moved to a much larger hospital for an operation to put in a zipper type seal. Obviously we went and stayed with him at both locations. The operation was a great success and thankfully he's been fine since. He's now 32. Like your son and most other who suffer a SP he is tall and slim.
Sending hugs as I know exactly how you feel. Very best wishes for a speedy resolution and recovery.

PinkZebraStripes · 19/08/2025 18:29

MoSalahsBeard · 19/08/2025 12:10

Seems like he will be having a talc pleurodysis too from what they said this morning. The lung is draining ok at the moment but there is a leak they need to fix. Hes very freaked out by what’s happened and the tube coming out of his chest, so they’re going to give him something to calm him down.

the hospital have given us a double room 2 floors up so we can sleep here tonight and then we are going to have to tag team staying with him as we are out of clothes and stuff. My very kind friend has asked if I want anything brought up but we are 45 miles from home and I can’t bear to ask her to get knickers out for me!

Show quote history

Bless you OP.. Sending hugs. I don't know which hospital you are at but the surgeon will be very experienced. When the drains gone it's a relief. Best wishes to you.

stayathomegardener · 19/08/2025 22:05

Sending all three of you strength.

YanTanTetheraPetheraBumfitt · 20/08/2025 06:41

Hope you got some sleep last night.

olympicsrock · 20/08/2025 06:56

Thinking of you OP. He’s going to be ok . He needs critical care so that they can use the pressure of the ventilator machines to help reinflate his lungs . Although it’s scary this is highly fixable.
I have known lots of people with Marfans in their 50s/ 60s - it’s far better to find out this diagnosis now so he can be monitored .