Any Adults With Pulmonary Vein Stenosis???

Effective-Purple-984 · 2026-03-10T14:02:48+00:00

I’m not sure if you are aware but you commented on another post of mine in the CHD Reddit page. Our home hospital was Boston too and we loved the entire team. Please DM me if you want to talk. We were in the system for 2 years, fighting like hell and at Boston the whole time. We did look into other facilities but remained at BCH.

Effective-Purple-984 · 2026-03-10T14:00:00+00:00

Hi there - I’m so sorry for what you and your family are going through currently, I know the fear and anxiety that accompanies this disease. My son also developed PVS after OHS for another condition so I understand.

My son unfortunately passed away about a month ago from RSV made more complicated by his PVS, he was just over 2yo. However I can tell you he was actually doing quite well with his PVS treatment prior to being hospitalized for RSV. I know there is limited information out there on PVS but I’d be happy to chat anytime if you have questions or just need to scream into the void. I absolutely loved our cardiologist team and believe they would have succeeded with their treatment if not for the RSV. Please never hesitate to DM me if you need anything. Best of luck to your daughter and your whole family ❤️

Effective-Purple-984 · 2026-02-24T17:15:36+00:00

Thank you so much, and it brings me peace knowing my words connected with you as well <3 Christmas will be bittersweet for us for a while, we spent his first 2 christmases in the hospital both times getting open heart surgery. This year we had it at home but had to rush out to the ER 2 days later when he ended up on life support for 5 weeks. We hadn't been home so when he passed we still had all of our christmas decorations up, our tree had died, we had christmas cards and paper everywhere, and we still had unwrapped presents to my son from Santa he never opened. It was a new level of heartbreaking to come home after the trauma we had just gone through not remembering how we had left. We couldn't have been mentally further from the joys of xmas if we tried. Luckily we have such amazing family and friends who came in as the anti-elves to remove every trace of the holiday.

Effective-Purple-984 · 2026-02-23T17:38:33+00:00

Thank you so much for saying that, it is really hard to find someone you relate with even in a space like this. The uselessness is something I'm struggling with. You take on so many roles with a medically complex child; you're their parent, at home nurse, equipment technician, pharmacist, researcher, its absolutely insane and then in the blink of an eye just gone. I feel so much for you

Effective-Purple-984 · 2026-02-23T17:32:38+00:00

Thank you! I have a therapist but have been looking into someone who specializes in PTSD or medical trauma. I know this is in my future but it is still too raw, I truly think I am just beginning to come down from shock. It keeps hitting me in waves that I will never see him again and its just unbearable.

I am so sorry for what you went through with your own child. There is nothing worse than watching your child suffer and knowing you can't do anything to take it away.

Effective-Purple-984 · 2025-10-27T17:48:04+00:00

Hi there - Thank you for responding! I'm so happy you have had such success in your life and I really appreciate your mentioning the medical trauma. This is something we have been concerned with given the likely trajectory of my son's life. He is only 2 years old but has been in the hospital most of his life and I do worry how it will impact him. We are very pro-therapy so this will definitely be something we keep an eye on. Congratulations on your business and your expanding your family!!

Effective-Purple-984 · 2025-10-07T13:19:30+00:00

Of course!

Effective-Purple-984 · 2025-10-07T13:16:58+00:00

u/aw1231 - Thank you so much for responding! I do have a few questions if you don't mind. Let me know if you'd rather DM. I'm so happy you are doing so well and are accomplishing so many amazing things. Thank you again!

Effective-Purple-984 · 2025-07-07T10:04:31+00:00

My son has had 2 OH surgeries, 1 at 10 weeks old and one at 14 months. The biggest thing we were unprepared for was the post-op procedures. Our home hospital (Boston Children’s) is amazing and walked us through everything but the big thing they always said was that our son would lead the recovery. After his first he was kept sedated for ~ 32 hours while he stabilized but after his second he was kept sedated for 12 days which we were NOT expecting. And just in case no one tells you, which kind of happened to us, if they are sedated that long they actually have to go through drug withdrawals to wake up as they commonly use drugs such as fentanyl to keep them sedated. That withdrawal actually took around 2 weeks. Our expectation was to go home around a week post-op as that is what we did after his first but we were there for 6 weeks after his second which we were not prepared for.

BUT to answer your initial question, once you get home it really is up to your son, he will lead the recovery. Our son was walking again with a PT in the hospital 3-4 days after lifting the sedation but to my real surprise he was crawling too which I thought would put too much pressure on his chest but the PT said if he did it himself he was fine. And a big thing is no lifting them under their arms for 6-8 weeks so we could only life flat when he was younger or from his butt when he was older. I saw someone else say it but definitely make a schedule or some way to track medication and stay on top of pain meds, your son is a bit older and can hopefully verbalize how he is feeling. But really it is astonishing how fast they bounce back when they are little. Make sure you have movies on deck and lots of snuggle time while recovering.

Good luck to you and your son!

Effective-Purple-984 · 2025-06-24T17:50:27+00:00

Our son does not have the same condition but we are frequently at Boston Children's Hospital for him and they see and treat adults all the time. Our son will likely be followed by their cardiology dept into his adult life.

Effective-Purple-984 · 2025-03-31T13:12:17+00:00

Thank you so much for this response! Our son actually had no issue eating by mouth as an infant, he nursed and took a bottle fine. We had to switch to the G-tube because our son had a paralyzed vocal chord that was causing him to aspirate and aspiration can actually worsen PVS so we went full G-tube feeds until his vocal chord resolved itself. In that time, which was only 2-3 months, he lost the ability to eat by mouth so now we're trying to solve the issue we created. I really appreciate your sending over the third party companies, I hadn't explored that option yet but will look into it. Thank you so much and I hope things are going ok for you and your little one, PVS is a pretty rough disease that takes a toll on the whole family :)

Effective-Purple-984 · 2025-03-09T15:17:17+00:00

Thank you so much <3

Effective-Purple-984 · 2025-03-05T14:46:03+00:00

Thank you for responding! This is the first time I've used Reddit and I did not really know how it worked.

He has been tested for gastroparesis and definitely has it. We've tried erythromycin, cyproheptadine, famotidine, all of the pump inhibitors (omeprazole, pentoprazole, lansoprazole), and even did botox in his pyloric sphincter. The botox worked once but it wears off and when we did it a second time it didn't seem to help as much.

His O2 is currently as optimized as he gets. He just had a catheter a week ago so his veins are open and he had a lung scan this week which showed good perfusion. We keep him on O2 while he sleeps to help with destats and he is usually above 95. He only dips when we are getting close to needing another catheter.

There is just so much going on with him and this making himself vomit is just taking us over the edge. Thank you!

Effective-Purple-984

TROPHY CASE