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24 Mar 2019
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TOPIC: 14 year old son had the Nuss procedure for pectus excavatum at CHKD

14 year old son had the Nuss procedure for pectus excavatum at CHKD 5 years 11 months ago #677

About 3 years ago, we started noticing my sons flairing ribs and chest indenture. Looking back on pictures now, he always had it but it really became more noticeable as he grew older. We took him to his pediatrician twice over a 2 year period (11-12 years old) because we were concerned about his chest and ribs. Both times he said it was just cosmetic and wasn't anything to be concerned about. I began to question his judgement as I read more Pectus Excavatum (PE). I started thinking about my sons random complaints of chest pain over the past 2 years, and remembering how often he had his hands on his hips and slumping over during football practice and games trying to catch his breath. I was recognizing some things but he never complained. He would always go swimming without a shirt at the pool and was never teased about it.

By last summer (at the age of 13), we noticed he was visibly struggling compared to the other kids during exercise- they were less fit than him but able to last a lot longer than him without any problems. Bothered by this, we decided to take him to a pulmonologist for an evaluation- he checked his lung functions and did a CT of the chest.
His haller index was 4.3 and his lung functions were 85% (85-100 is considered normal).
He had no history of any lung problems, he's young/lean/physically fit and he's only 85% (and that's at rest)? It scared me to think what is was during exercise. The haller index was in the severe category and the CT noted the sternum was pushing on the right side of his heart. That, too, explained why he was short of breath during exercise (during exercise your heart is being engorged with blood and pumping at a higher rate, this adds more internal pressure with no place to go). Since it was pressing on the right side of his heart, the pulmonologist suggested we see the cardiologist- we did and his heart was fine. After much thought, finding out as much information as I could online, and through much advice from people with PE, we talked to our son about the options. My biggest concern was that the PE would continue to worsen over time and that he may have problems associated with it, like with his heart, when he's older. We had a neighbor whose brother had PE and died of an unexplained heart problem at 51 and I read some of the complications people have in their 30's and 40's from PE. It also bothered me that he would continue to be so short of breath and suffering during all these activities- I just wanted him to feel normal and to enjoy being an active kid like everybody else. We agreed that he should have the surgery.
As a nurse, I know that the choice of a surgeon was going to be the most important element to the outcome of his surgery. I spoke to several people who had done the Nuss procedure locally (South Louisiana), but they were on narcotics for 6 months, had pain for a long time, weren't pleased with the outcome, etc. Everything I read about Childrens Hospital of the Kings Daughters (CHKD)convinced me that I wanted him to have this surgery there. They had done thousands of these procedures, their patients seemed to recover in a short period of time without the complications that many other people had experienced. I contacted them and over a period of 7 months, we communicated via phone, fax, and mail. From start to finish, they guide you through every phase of the process. I requested Dr. Kelly because he had been doing the Nuss procedure for many years and worked with Dr. Nuss.

I didn't want my son to miss any school so we scheduled the surgery for the end of the school year. During the school year, he continued to play sports-football (playing defense and offense), lacrosse, and track. By the end of the practices, games, and meets he was exhausted. It would take him the rest of the weekend to recover sometimes. He was pushing himself because he wanted to play so bad. During a lacrosse tournament, I had him pulled out of a game because he was really struggling- he just couldn't catch his breath. I was worried he was going to pass out. That was enough for me and I think it scared him too! We explained to him that he was no good to his teammates when he's that exhausted and that its not worth the risk. From that point on, he would ask to rest or tap out of the game when he got too fatigued.

May 28th, 2 days before his surgery, we flew to Norfolk, Virginia. We met with Dr. Kelly for the first time, toured the hospital, and did his bloodwork. Dr. Kelly was very nice, honest, soft spoken, he had a calm demeaner, and explained everything thoroughly. Even though we were scared to death about our child having surgery, I didn't want a surgeon that would coddle me- I wanted to know and feel that my child was going to be in the hands of the most experienced, seasoned, skilled surgeon. We all walked away from that appointment with dr. Kelly with complete confidence that we had chosen the best.
My sons only question for dr. Kelly was "am I going to be in a lot of pain?" Dr. Kelly reassured him that controlling pain was their top priority. And it was!

Day 0-
The surgery could not have gone better. During surgery, someone from the OR called us in the waiting room every hour to keep us informed. After the surgery, Dr. Kelly spoke with us privately -he went over everything: the surgery, all the post op instructions, his expectations, and even gave us pre/during/post op pictures-incredible! As soon as my son woke up after surgery he asked to look at his chest. It looked awesome and he said, "wow, I can't believe how normal it looks." That brought tears to my eyes and I knew at that moment that this was all worth it.
They adjusted his pain medication after the surgery so he was able to do the breathing exercises, etc. He was on Fentanyl PCA pump but developed a rash so they changed him to Dilaudid- it was continuous, and every 10 min he would press the button for a bolus. Valium and Toradol every 6hrs., and Colace. Aside from a little nausea, he did very well.

Day 1-
Medication still controlling his pain- in the am, a chest Xray was done while he was in bed to check bar placement and his lungs- all good. Bloodwork done and urinary catheter removed. Physical therapy instructed us on how to get him up in the chair, started short walks. We kept him doing the incentive spirometry the whole time- key to preventing pneumonia!! And in between sleeping, he would text his friends:)

Day 2-
They started weaning him from PCA pump, no longer continuous delivery, only getting boluses. They added Percocet by mouth and he adjusted well. He was till on valium and toradol, and they added robaxin. We walked with him 6 times that day and did a few stairs.

Day 3-
In the am, they took him down in a wheelchair for a Chest xray (all good!). They started weaning him off the Dilaudid, alternating 2 Percocet and Robaxin, and Toradol and Valium every 3 hours.

Day 4-
Iv discontinued, only on oral meds and doing well- Percocet and Robaxin every 6 hours, alternated with ibuprofen 600mg and Valium every 6 hours. Still on Colace and added Miralax. They had to end up giving him an enema to have a BM so we could be discharged! After that, we filled all his medications and headed to our hotel (the Residence Inn/Norfolk on Brambleton-5 minutes from the hospital, this hotel was awesome!)
He slept in a recliner that night. Sleeping was always uncomfortable:(

Day 5-
Same medications as day 4- he's walking, doing breathing exercises, following all the postop instructions. Dr. Kelly saw him every day in the hospital-he was awesome!

Day 6-
We met with Dr. Kelly in the morning for his postop appointment and flew home that afternoon. (2 days earlier than expected!) Thank you Dr. Kelly and CHKD! Still on his meds every 3 hours and incentive spirometry in hand, we headed home.
[We had booked our airline reservations over the phone months before- they gave him priority seating that had a little more room for his flight home. They knew ahead of time that we may need to adjust our flight home, so they allowed us to change our flight to go home earlier without penalties. Upon our request, the airline provided him with a wheelchair at both airports (I highly recommend). A nice gentlemen even assisted us to our connecting flight (Delta was awesome!)]
Sitting in the airport waiting was the hardest part.

Day 8-
We followed all post op instructions-Walking, all exercises, his pain was never above a 3 with his medications.

Day 10-
I started to wean him off of the Percocet and Robaxin, I discontinued the Miralax. He was walking up to couple of blocks. A lot of people recommended sleeping in a recliner, but he was never real comfortable in it, so at this point he started sleeping propped up in his bed.

Day 12-
Off Percocet, Robaxin, and Colace. Still on Ibuprofen and Valium- little to no pain. Walking further, showering and washing hair without help.

Day 14-20
On ibuprofen only- still doing great!

3 weeks post op-
As instructed by Dr. Kelly, we followed up with his pediatrician. At our visit, he asked my son when he was having his surgery! We laughed and told him 3 weeks ago- he said that he looked so good, he couldn't believe that he had already had the surgery!
Yes... this is the same pediatrician we had seen about the PE that told us not to worry about it. He's a really good doctor - nobody's perfect:)

5 weeks post op-
We went to the beach- He relaxed, swam, and had fun.

6 weeks postop-
Still following all the CHKD instructions- started riding his bike, allowed to do a lot more now.

10 weeks post op-
Started his first day of high school. I only had a friend help him the first day to minimize lifting (carry supplies, books). I informed his school about the bar and he wears a medical alert pendant that the hospital told us to get (in case he needs CPR).

He is now 11 weeks post op. He knows he will not return to playing football because its too risky. He's a smart kid and understands that his health is more important. At 3 months post op he can begin training for Lacrosse and start a more rigorous workout. Even though Lacrosse is not recommended, he plays defense and it is a lot less contact than football so we'll just have to see when the time comes.
I attribute my sons successful surgery to him having the best surgeon, being in a hospital that is very experienced with this surgery, and the many people praying for him. I attribute his awesome recovery to him being young, in great physical shape, strong, him listening to/following all of the CHKD instructions, and many prayers.
I thank God for guiding us and taking care of him every step of the way.

My son is an awesome kid, I'm so proud of him.
The following user(s) said Thank You: Lumadonajp, Idocad

14 year old son had the Nuss procedure at Childrens Hospital of Kings Daughters with Dr. Kelly 5 years 11 months ago #678

wow, that was a very thorough run through! welcome!

Sounds like your son is very lucky to have a concerned and loving family. The young ones usually do very well with recovery.

How many bars did he get? Stabilizer(s)? Any before and after photos?

Thanks so much for sharing his story!

14 year old son had the Nuss procedure at Childrens Hospital of Kings Daughters with Dr. Kelly 5 years 11 months ago #679

Sorry, I know my intro was long:))) I learned so much reading PE forums. They really helped me make a lot of my decisions and were very comforting. Knowledge was key to coping for me.

My son has one bar and one stabilizer (on the left side). His PE was symmetrical and deep, not "saucer" shape. The most wonderful part is that he'll comment sometimes how he forgets that he even has the bar- so great!

His chest looks fabulous- I will attach a pic we took before and one we took the day after we got home from the hospital. I have other pictures that really show the depth of his PE a lot better, but these are the only ones that aren't showing his face so I feel comfortable posting them.

Thank you!

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14 year old son had the Nuss procedure at Childrens Hospital of Kings Daughters with Dr. Kelly 5 years 11 months ago #680

another dent bites the dust. it also goes to show that you cannot estimate Haller by looks alone. I wouldn't have guessed a 4.3 Haller there.he looks great, nicely done. throw Dr. Kelly a review if you'd like

14 year old son had the Nuss procedure for pectus excavatum at CHKD 5 years 11 months ago #681

Hey. Thanks for posting. My husband and I read your post last night andit reminded usvery muchof our son and our recent experiences. Our son is 12 and had his surgery in early April. He also was a 4.3.

I am so glad you figured things out and everything went well. We were very nervous and not experienced with hospitals, surgery and the like. There were definitely some rough times but we are also now in a position where we mostly forget about it. Our son is also at that point and it feels good. I told him about your post as we walked to the bus this morning.

I too have found this website, the forum, the people and all the information very helpful, reassuring and comforting. I am not used to reaching outsideof family and friends for advice and support, but, when you don't have family andfriends with any experience and practical information it is great to have a place like this to reach out to.
The following user(s) said Thank You: smjsmith, Jen0508, slspoon, Jeanine

14 year old son had the Nuss procedure at Childrens Hospital of Kings Daughters with Dr. Kelly 1 year 3 months ago #7135

The picture here is good quality and it’s nice to know pectus excavatum is common but (not trying to be offensive) I’m twelve and my chest is about two times deeper than that and my dent is about 4 inches wide goes from 4.5 inches down from my collar bone all the way to the bottom of my ribs and my dent is about an inch and a third deep
The following user(s) said Thank You: MattsMom

14 year old son had the Nuss procedure for pectus excavatum at CHKD 4 months 2 weeks ago #9005

Thank you so much for your account of your son's experience with the Nuss Procedure. We are considering this for our son who will be 12 when it is done. I see that your son's op was over 5 years ago. Could you tell me if it has been worth it?
I am so worried about the recovery from this operation.
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