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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:
madaboutpurple · 17/08/2025 22:47

Sending my love to you and your family. I hope that your son gets the help he needs.

Endofyear · 17/08/2025 22:59

Sending you and your son massive hugs 💐 my cousins have Marfans. They are very carefully monitored and there are excellent treatments now. You're going through a scary time now but if it does turn out to be Marfans, it's so much better to be diagnosed at a young age as his symptoms can be treated. Do get in contact with Marfans Trust for support x

Original poster
MoSalahsBeard · 17/08/2025 23:51

Thank you for your support. I completely burst into tears when the dr came round and she took me off for a chat and a walk. I’m staying here tonight with him but I am 100% going to go home for the night tomorrow- desperate for my own bed and some proper rest.

OP posts:
TrousersOfTime · 18/08/2025 00:06

Hopefully the talk with the doctor has helped you a bit OP.

I remember when a young relative of mine was being tested for a different genetic disorder. The uncertainty was horrible. Once they got the diagnosis, there was a lot to deal with (including some frightening stats) but at least it felt like there was a plan and they were actually doing something.

I hope you have a good rest tomorrow night OP - a proper meal (nothing too faffy or time consuming - just pasta and a nice sauce, or omelette with a nice filling - whatever reasonably nutritious comfort food you feel like), followed by a hot bath or shower (possibly with lavender or patchouli scented smellies) and clean bedding can work absolute wonders and will help you to have the energy you need to support your son.

SmegFridge · 18/08/2025 00:25

Sorry to hear you're all going through such a rough time. I know a thing or two about Marfan's and the investigations as I've watched very closely when a loved one has gone through it all. If it does turn out to be Marfan it's brilliant to get an early diagnosis so one can be monitored and the doctors can take steps to prevent and treat any issues. It also may not be Marfan and it could be just one of those things. Two other people I know were tall and thin and had multiple pneumothoraces and they don't have it.

Having a pneumothorax in itself sucks but your DS is in the right place and treating is usually pretty straightforward. I hope your DS gets better soon. 💐

I'm not a medical professional but would happily chat if you ever need someone to talk to.

DangerFrog · 18/08/2025 00:32

Oh, big hugs. I was in your shoes last year - my 15 year old had multiple pneumothoraces. He ended up in surgery. Marfans was suspected but eventually ruled out; We've never had a clear reason as to why it happened.
If it is Marfans, it's better to know sooner rather than later - he can be properly monitored and cared for.
As for you, you need to look after yourself. I wanted to be with my son 100% of the time, but it did him good to have some time with his Dad and it did me good to get home and get some proper rest. You can't help him properly if you're not fit. Take care.

Original poster
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

OP posts:
rainbowruthie · 18/08/2025 21:10

Oh sweetheart I'm still here
ICU will look after him
Sending the hugest hug to you x

summerday25 · 18/08/2025 21:11

We’re still here OP. I can’t even begin to
imagine what you’re going through right now, just wanted to say I’m thinking of you. Have they come up with any diagnosis yet? It’s easy for me to say it, but try not to think of the worst at the moment, just keep going best you can. Do you have anyone with you?

butterfly0404 · 18/08/2025 21:19

Praying for your boy x Hold strong for him xxx

Wateringinaheatwave · 18/08/2025 21:25

courage courage. Don’t look ahead, just keep looking at him.
I’m so sorry you are going through this

Endofyear · 18/08/2025 21:28

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

Oh OP, I'm so sorry to hear this 😔 please don't despair, intensive care will be the best place for him and they will do everything in their power to make him well - they have incredible doctors and nurses. Hold onto hope and faith that they will treat him successfully. Do you have some support there with you, family or close friend?

Kirbert2 · 18/08/2025 21:52

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

I'm so sorry to hear that.

Intensive care will look after him and hopefully it is more for precaution than anything else and he'll be back on to the ward very soon.

My son spent 7 weeks in intensive care last year, he wasn't expected to survive but he did and looking at him now, you'd have little idea of how critically unwell he was just last year.

There's always hope, don't forget that xx

RandomMess · 18/08/2025 21:53

Huge hugs 💐

Zanatdy · 18/08/2025 21:56

He’s in the best hands OP. Sending you love and strength. We are here for you.

StopGo · 18/08/2025 21:58

Sending love and empathy.

YanTanTetheraPetheraBumfitt · 18/08/2025 21:59

He’ll be in the best place. Intensive care involvement doesn’t mean he’s going to die, but just that he may need support with breathing while they sort the lung collapse out. Thinking of you.

Lougle · 18/08/2025 22:00

Things that are very scary at ward level can be very mundane and routine at ICU level. They will be all over him, making sure he's as stable as possible.

Do you have supplies to keep you hydrated?

doodleygirl · 18/08/2025 22:00

I’m so sorry to hear how poorly your boy is? Sending love and all our good thoughts

NewAgeNewMe · 18/08/2025 22:01

Sending hugs your way. Your beautiful boy is in the best hands & they will be taking such good care of him.

BloodandGlitter · 18/08/2025 22:04

Sending you love, as trite as it sounds he really is in the best place right now. Don't forget to look after yourself during all of this. Put your oxygen mask on first so you can keep strong for him.

LoveItaly · 18/08/2025 22:04

Sending positive thoughts and love too, I hope you manage to rest a little so you can stay strong for your son.

mechanicalpencil · 18/08/2025 22:05

How absolutely awful OP
I am so very sorry to hear your son is so poorly.
Sending strength 💜

Gremlins101 · 18/08/2025 22:09

Sending hugs OP 💐

YesHonestly · 18/08/2025 22:10

Sending love and praying for your son OP x

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