Phenuothorax

[jshet]

My 17 year son went in on Tuesday to have a port placed. An outpatient procedure that was to last 45 minutes took over 3 hours and 3 tries to place and caused a phenuothorax. He was admitted and they went back and forth on whether to put in chest tube. Though it hasn't improved, he wasn't having any symptoms and decided after 8 chest X-rays, he could go home today but I have to take him back (1 hr. 20 min. Each way) in the morning for another X-ray and call the surgical dept. for the results before we can leave. The hope is it will heal on its own.
The surgeon who placed this is the leader of the transplant division and has put in thousands of ports and has never had this happen. He said my sons lungs sit abnormally high in his chest compared to typical people. He said the first incision and air came out. Second try, same thing. Then when they were doing the chest X-rays in his bed with different technicians each time, 4 of them commented on how long his lungs were. They said if they were any longer they would have had to take 2 pictures to get all all them.

i have never been told any if this before and am wondering if any of you have been told this about your lungs. I did see a couple of articles saying long lungs are hyper inflated and are seen in people with cf. Can't find anything about how high his lungs are in his chest though. Just wondering if anyone has any experience with this happening to them or their child.
thank you everyone, jshet

 

[cam]

Yes i have been told i have long lungs but had no problems with that issue sorry to hear that let me know how it goes i might have to get port soon really nervous bout it all my veins r gone

 

[ToriMom]

I am so sorry to hear you are having such a hard time with the port placement. I know his stomach tube surgery was also a terrible ordeal for your family. He has had such unusual complications. I was hoping this port would go in with no bumps in the road. Keep us updated and I will say a prayer for him.

Michelle, mom to Victoria (13 w/CF and gtube & Trace 17, no CF, autistic)

 

[jshet]

Thank you both for the replies and well wishes. Unfortunately after seeing the X-ray taken today, he was admitted and will be having surgery to have a chest tube put in. It has gotten worse and he is now moving no air on the right side.

there is a huge concern because he has a bleeding disorder and this is a high risk of this to happen with the surgery. Also I was told it is a very painful surgery and he will feel on IV pain meds and oral.

they did access his port, and it is working well.

Surgery will ill be happening later tonight since he set before we came to the hospital.

 

[Melissa75]

I'm so sorry your son is going through this. I hope his surgery went well and they're able to keep his pain under control.

Ive been told by xray and CT scan techs that I have long lungs. For me though they miss the bottom of my lungs and have to take a second film. I also was told by a Dr who did a bronchoscopy on me that I had unexpected geography in there. He was someone else in my reg drs practice and I never saw him again or I would've asked more questions once I felt better.

I have Von Willebrands type 1, what bleeding disorder does your son have?

 

[jshet]

Hi Melissa75, the surgery went well, though still a lot of pain. If all goes well, they will pull the tube today and make sure his lung stays inflated. Going home hopefully late today or tomorrow.

my son has platelet dysfunction disorder. He has enough platelets, but they don't stick together. He does not respond to DDVAP, so he has to be transfused with platelets if a problem arises.

im going to ask the Pulmonologist about the lung things.

 

[BreathinSteven]

Hi jshet!

Sorry about your son's adventures! I've had similar experience -- not with ports, but with pneumothoraces and chest tubes and long lungs...

I think a fair number of us CFers end up with barrel chesting or elongated lungs -- it's our way of adapting to pull more oxygen into our starved bodies... I had/have more elongating than barrel chest. I regularly had x-ray techs take my pix, either in my bed or even in the x-ray department -- and, I would TRY to tell them that my lungs were unusually long and they would sometimes kinda blow me off... Then come back and retake because they missed the bottoms... So -- the long lungs I don't really find unusual...

I think that when lungs hyper-inflate -- it's possible for them to go up, down or out -- out gives us "barrel chests" -- up shows up like your son's... Down shows up like mine... On the long end -- they often seem to have to switch the x-ray film from "landscape" to "portrait" -- when they would come into my room and try to place the board in landscape behind my back -- that was the time that I'd generally get into a discussion with the tech to let them know that they might not be getting all of me... It's just something to know to avoid additional exposures...

Throughout my CF career, and before I received my two beautiful, new lungs (14 years ago tomorrow) -- I had 5-6-7 collapsed lungs... Most of them were tubed -- but a few of them were small, and managed to fix themselves. Though, they sometimes took months to resolve themselves... I think that having various procedures -- even some that are not directly IN the chest -- can fire up a collapse... I'm sorry your son is dealing with this, and I hope it resolved soon... Love, Steve

 

[Melissa75]

Hi Melissa75, the surgery went well, though still a lot of pain. If all goes well, they will pull the tube today and make sure his lung stays inflated. Going home hopefully late today or tomorrow.

my son has platelet dysfunction disorder. He has enough platelets, but they don't stick together. He does not respond to DDVAP, so he has to be transfused with platelets if a problem arises.

im going to ask the Pulmonologist about the lung things.

Hi, I hope your son is home now and doing okay. I'm sorry he needs a transfusion if he bleeds too much. I'm sure that adds another layer of stress to what he and your family go through.

 

[jshet]

Hi Steve and Melissa, we are home finally. Jacob is sleeping right now and is completely pain free. No more narcotics, thank God. He has a follow up tomorrow with his pediatrician and a follow up with the surgeon in 2 weeks.

Thank you you for the well wishes and for sharing your experiences. Hoping this is all behind us now. Take care, Janelle