13 year old DS diagnosed with Pectus Excavatum.

[GiddyMoon]

Quote:
What a handsome guy! He looks pretty happy on Day 5.

We haven't been to the specialist yet. We decided to explore our options today. I sure hope we can find a good doctor near here.

He did very well thru this..I am very proud of him.

Our pediatrician sent us to Shriners and they paid for everything. You don't have very many options if this is serious enough to need surgery. Contrary to what some say..exorcise, etc..does NOT fix it. Some people do ignore it, but they are leaving themselves open for pressure on their heart and lungs. Putting it off doesn't help..if it needs to be done. There is a few research studies going on with the use of magnets. Otherwise; there are only two ways of doing the surgery really..a very invasive break a bunch of ribs type and the less invasive Nuss Procedure which is what you see here.

He was in the hospital for less than a week and in bed for a few days after that...that is it. I would do it again in a heartbeat if we had to. The bar stays in for about 3 years..once puberty is about over, they take it out. If you have any questions, don't hesitate to ask.

 

[juliechick]

Thanks for your replies. What you're saying is what we had already decided - that we don't need to ignore this. By options, I just meant that we had decided to go ahead and get the ball rolling on fixing this. I think my son's may be a bit worse than your son's was. (Hard to tell in photos.) I'm ready to get the MRI and find out how serious it is. I need to read more on Marfan syndrome. I just skimmed over that yesterday.

I may have more questions later. Thank you!

 

[GiddyMoon]

My pleasure..just don't beat yourself up over it. It comes on really fast and if you have a kid who doesn't hang out without his shirt off, or comes up and says..hey, look at the big hole in my chest...LOL..it is easy to not really see. I can remember pointing it out to my pediatrician years ago but it was so vague..just slightly off center..no one really knew. In any event; Shriner's was awesome..everything went super smooth...Sam is doing great and I am very happy we had it done! If you have any questions, you can email me as well.

 

[hisdaughter]

I am a school nurse and have seen 2 students with this condition. They too had surgery. It went well and the children are doing great! The Shriners organization is wonderful! Yo can search them on the internet, apply online or find phone numbers and the location information. We recommend them for scoliosis evaluations but they do so many other great things. I will pray for you and your son. Times like this really test your faith but know He will be with you all of the way.

 

[mrsengeseth]

Will be prayin for your son, when the surgery time and test are performed. He'll do great.

 

[juliechick]

I made the appointment today for the specialist. We'll see him on this coming Tuesday. I am slightly amazed at how no one seems to know what I'm talking about when I say pectus excavatum. I mean, the average person wouldn't know, but I had to spell it 3 times for the lady making the appointment at the specialist!! She thought I was saying "texas". lol

 

[jojo@rolling acres farm]

My cousin had the same condition and had surgery as a very young boy. Turned out great he's a father of three now...a new set of twin girls. Good luck with your son. I know it is a worry - but with surgery - I think he'll be just fine. I'll hold good thoughts for you and your family.

Joni

 

[cackydoodledoo]

I have had it all my life. I do remember when I was young the doctor calling it something but evidently they weren't worried about it. It can make my heart sound like it has a murmur at times. I doesn't really bother me otherwise or at least if it contributes to me be short of breath or tired then I don't know it. I just have always put that off as lack of sleep or something else. The only time I can remember it bothering me was when I got into a bad car accident when I was almost 17. It felt like it had cracked or something. Excrutiating pain and they did xrays, scans and a barium swallow to try to find the cause and nothing!! It eventually went away. I wish the best for your kiddo!!

 

[juliechick]

Update: Noah had a CT scan done Tuesday. His Haller index is a 4.2. (A 3.25 index is considered severe.) So, insurance will help us to pay for his surgery! Thank God for that! Right now we are waiting to get tested for allergy to nickel (the metal used to make the rod they will put in his chest). Then we'll have heart tests and schedule the surgery, hopefully for July. Thanks for the prayers and please, continue to pray for him this next month.

Children's Hospital in Little Rock will be doing the surgery. So far I feel great about them. They seem very warm and professional.

 

[sfw2]