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.

POSSIBLE syndrome not portable. I’m tired

I am so sorry for your son and you.

Hopefully the medical team will get plans into place and things progress more positively and you get a clearer idea of what is what.

I've a child who has had various times in hospital and I found it petrifying. Be kind to yourself, you'll be supporting your son and it's draining. Make sure you get some fresh air and keep hydrated and snack when possible.

I hope there's some good news soon.

Bless you OP. That is such a worry especially being so sudden, poor DS and you. One of my DS’s was in last year and it was terrifying, so I know how you feel. It’s fear of the unknown too isn’t it? PP is right, make sure you keep hydrated, fed and take five for yourself so that you can get some fresh air. I hope that you get some answers soon so that they can make a plan of action. Thinking of you x

I presume they are considering Marfans Syndrome?

That sounds like a horrendous 24-36 hrs. I hope you and your son get a clearer diagnosis soon.
Do you have anyone IRL to lean on for support?

It really isn’t fair is it.

Look after yourself during this time and everything crossed for a good outcome.

Hi OP, sorry to hear this. Is he tall and thin? This could be Marfans. My sibling has it. Let me know if you have any questions. Hope your DS feels better soon.

Sending you all the best OP

If it’s one of the fibrillin disorders loeys dietz or Marfan then it’s extremely good to have found it early so he can be properly monitored xx I know it’s a lot to take in xxx

Yes it’s Marfans. Any info you can give me would be appreciated.

to make matters worse we have now been moved to a busy London hospital on a chaotic ward with crying babies. No sleep for us tonight. I’m on my knees with stress and exhaustion.

I am sorry 🥺

At times like this, mumsnet is great. You dont have to be strong on here, and can expect support ❤️

Its okay to be scared. Who do you both have for support? How is he coping?

When will you get the next update? Small steps now, update from the doc by update is how you will get through x

Husband has arrived at the hospital now but only one of us can stay tonight obviously. I’m torn between going home actually getting some sleep and staying here with him. My friend offered to come up tomorrow but it’s too chaotic in here for 3 people to hang around.

ds is anxious but alright really. He’s joking and stuff. It’s all been scary for him though. He’s been bullied for years for his talk thin build so having a syndrome is yet another thing for him to cope with.

Husband has arrived at the hospital now but only one of us can stay tonight obviously. I’m torn between going home actually getting some sleep and staying here with him. My friend offered to come up tomorrow but it’s too chaotic in here for 3 people to hang around.

ds is anxious but alright really. He’s joking and stuff. It’s all been scary for him though. He’s been bullied for years for his talk thin build so having a syndrome is yet another thing for him to cope with.

Is he tall and slim apparently this can be a thing for young tall slim males .
Completely different but my now 18 year old ended up in critical care at 16 for an illness very rare for his age it was terrifying I hope your son gets answers and a treatment plan.

I'd get some sleep if you can. I didn't leave my son for a week through worry when he was in hospital and the lack of sleep made me ill for over a year afterwards. I wish I had got rest when I could

I'm really sorry that you are going through this. It's obviously a shock and a huge thing to deal with but now that he has a diagnosis you will have care and support.
Marfans is often missed. Once you know it can be managed.

He's fortunate (although it won't feel like it right now) that he's had this spontaneous pneumothorax. It's an easily treated way to full investigations, diagnosis and monitoring.

The ex has it. Strong as an ox, 6'5" and as much of a dickhead in his 50s as he was in his 20s when he got the diagnosis.

This is a great resource https://www.marfantrust.org/

Im sorry to hear you are all going through this. Can you and your husband take it in turns so at least you can try and get some rest? Sending you my warmest wishes.

In case it helps, I had multiple spontaneous pneumothoraxes between ages 19 and 22, then had surgery to fix the problem, I was seen and treated at a big hospital in South London. They hurt quite a bit, but they are very fixable. I’ve had no problems since my surgery and I’m now 42. I remembered being really surprised how common they are and how good the doctors were at sorting it out. I didn’t end up having Marfans but a hypermobility condition that made me more at risk. I found the NHS was excellent at dealing with this kind of thing in young people. Whatever happens your son is in good hands now, and they know how to treat these things, and get people back to normal lives again. Sending you all best wishes.

It is so incredibly frightening having a child in hospital, especially when you aren't 100% sure what is going on. My son spent 10 months in hospital until January this year and the first while when we weren't sure what was wrong, it was just terrifying. He had two chest tubes to start with and his heart wasn't working well at all so he ended up on ecmo for 5 days as well.

It isn't fair, not at all. You'll get through it though, I promise. Big hugs xx

I really feel for you and your son. I hope he gets treated quickly and that you get good news soon.

Sending kindest thoughts to you and your son

How worrying for you - really hope things will be ok. If you can , I’d let your husband stay tonight and you go and get some sleep so you can cope with whatever tomorrow brings.
if a friend of yours were in this situation- what would you say?
You can’t pour from an empty cup. It’s great your DH has arrived - let him share this experience and cover tonight as it will help you all in the long run. It’s often Mums who try and shoulder everything- but sharing is much better for everyone where possible.
Sending a hug - and please take the chance for some rest x

Sending hugs, you sound like a wonderful mum xx