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

[MoSalahsBeard]

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.

Sending strength, prayers and all my best wishes your way. Lots of us holding you all in our hearts tonight ❤️

Thinking of you OP. My kids are being genetics tested for marfans. It’s a connective tissue disorder but can affect the eyes and heart. A common symptom is pectus excavatum where the chest is dipped in. Could this be something that is affecting his lungs? I’m praying for your son. Please give us an update when you can. We are all here for you OP. X

Lean into the rl support there, op, and I’m thinking of you all and wishing your poor lad well, along with your family. X

Honestly I know it's terrifying my son was in intensive care for three weeks just over two years ago but they are amazing, they explained to me that they are able to support every organ if they needed too ,they were very close to putting my son on a ventilator but managed to avoid I know how awful it is seeing your child so sick and not being able to do any thing but he really is in the best place.

Hope your DS is doing ok xxx

Of course you are scared, your family is facing the scariest time. The doctors are on it and it sounds as though they want to give him extra support in ICU. I wish you love and strength and hope your boy improves very quickly. Take care of yourself x

Sending you all the best wishes

Hope everything is ok xxx

I am thinking of you. I have had a loved one in intensive care and it's amazing what they do to support the body and how they can turn a bleak situation around. Wishing you and your boy all the strength.

Thinking of you and sending your son strength xx.

I’m really touched by all the wonderful support here. I have DH here but we are both done in and emotional and keep crying on and off. Looks like they’re putting a bigger tube in tomorrow and down the line he will have to come back for surgery as they think his lung will collapse again. They’ve kindly offered us a ward bed and single bed accommodation to sleep in tonight, so as soon as he is moved over we will try to get some sleep.

Thinking of you all. He really is in the best place he can be. Try and get some rest.

Oh gosh, how utterly terrifying for you and his dad. I’ve not got anything very useful to say, other than it sounds like the hospital are absolutely on it with him. Sending you so many positive thoughts 💐

Hugs and prayers for all of you.

Sending you positive vibes. I hope it’s good news soon for your daily. So sorry you’re all going through this

thinking of you all op x

He is in good hands please have some trust in the medical system, sincerely hope he will be ok, poor lad❤️❤️

Thinking of you and willing good news soon! x 💐

I'd be terrified too in your shoes, but if it's Marfan syndrome, he's been living with it all his life and got this far. He's having a crisis now, but he's in good hands. They'll do all they can to help him pull through. Hope you get some rest.

Thinking of you and your DS and DH. It sounds so scary, I’m hoping for better news.

thinking of you OP

Thinking of you all op.💐💐💐

I completely echo this, OP. Please hold on to these words I think they’re really important. Sending you lots of love 💐

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.

from another mother who has had a son in intensive care
dont forget to eat and drink - even rubbish from a machine

everything will feel better in the morning.

Handholding here OP.

Please try and rest. Tomorrow maybe ask a friend to drop you in some essentials - easy to eat food, a cosy blanket and a notebook so you can write notes about what the staff say. It's very hard to remember when you are so stressed.

Hoping you have some good news tomorrow.