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Sunday, December 22, 2024

Recovering from the Nuss Procedure: Tips from the Patient Perspective

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Pearson Ehrich loves playing soccer, but when he was in 7th grade, he found himself struggling to breathe during practices and games.

Medical tests showed the Park City, Utah, teen had pectus excavatum, a condition in which his breastbone was sunken into his chest, which was crowding his heart and lungs.

His parents set about researching the best hospitals for corrective surgery, and learned about the internationally known Nuss Center at CHKD. This is where the “Nuss Procedure,” a minimally invasive approach to correcting pectus excavatum was developed, in which surgeons insert a curved metal bar under the ribs and sternum to reshape the chest wall.

Pearson traveled across the country to CHKD for the surgery in 2017, and returned in early 2020 to have the metal bar removed. He’s now 17, and pleased with the results.

“The surgery was 100% worth it,” Ehrich said. “It took some sacrifice, but without a doubt, it turned out better than my other options. Not only did I feel healthier, it gave my lungs and heart significantly more room to operate. I was able to breathe so much easier, and the procedure instantly changed my physical abilities. I felt a massive difference in my endurance while playing soccer. I was able to run for much longer periods of time.”

Pearson wants to help other patients coming to CHKD for the same surgery, particularly teens who come here from all over globe, to give them an inside perspective to what helped him.

Here are his tips:

Before Surgery

  • Be as healthy as possible. After surgery you might not feel like eating, so it might be a good idea to eat a little more than normal and get extra rest. The better shape you're in prior to surgery, the better you'll recover.
  • Talk to your friends. In the first few days and weeks after your surgery, you will need help so best to come up with a plan. Explain your surgery to a few friends and ask if they will help with activities like carrying books and backpacks.
  • Coordinate with teachers. Depending on when you have your procedure, you could have a conflict with a school schedule. During the weeks prior to the procedure, make sure to talk to all your teachers, and explain the situation to make sure everyone is on the same page. This will be very important for getting extensions, extra help, more time, etc.
  • Exercise and stay active before your surgery. This will help in recovery.
  • Find convenient lodging. My family stayed at a nearby bed and breakfast that was within walking distance to the hospital, which was very convenient.
After Surgery

Throughout your entire stay, the doctors and nurses will do everything they possibly can to help you with your recovery. However, there are a few things that only you can do.

  • Communicate about your pain. There's no way around it – recovery from this procedure is painful. However, the doctors and nurses at the Nuss Center are some of the best in the world at what they do and can work with you to manage it, but you need to communicate with them. If something doesn’t feel right, make sure they know. If something is worrying you, ask.
  • Walk. It doesn't sound like much, but the days after surgery you will likely not feel like doing anything, especially getting out of bed and walking. But it is super important for your recovery. You don't have to walk far, but plan on getting up five or six times a day.
  • Use your spirometer. When you have your procedure, you will be provided a spirometer, which is a plastic device that measures the strength of your breathing. Consistent use of the spirometer is what can quickly get your lungs back to 100%.
  • Keep eating. The good news is, you can pretty much eat whatever you want after surgery -- the doctors just want you to keep up your calories. The bad news is you might not feel like eating. My surgeon gave me a great tip: Eat 200 calories every two hours. This helped me a lot as I didn't feel I had to eat big meals, just a lot of snacks and drinks. Create a list of favorite foods and restaurants so that when you do feel like eating your family and friends will know what to get you.
  • Find comfort measures. I found that heat, not ice, provided the greatest comfort in the days following the procedure. Disposable, one-time use heat packs are very helpful to ease chest pain. Heated blankets are also very useful.
  • Sleep. Hospital monitors and machines can be quite disruptive – but sleep when you can!
Going Home

You will probably have the bar in place for two or three years, but it’s the first couple months that are most important as the body learns to accommodate the bar.

  • Continue using the spirometer even once you are home. It will get your breathing back to normal significantly faster.
  • Just as heat packs helped, I found warm showers very soothing.
  • We put a wireless doorbell by my bed so I could get my parent's attention during the first few nights at home.
  • My family invested in a few pieces of home health equipment, including a pulse oximeter, blood pressure cuff, and digital thermometer to be ready when I left the hospital. These were nice to have to ensure recovery was going according to plan.
  • Try to find something that is distracting without a lot of movement -- reading, movies, video games, TV, etc.
Surprises

While most people prepare for the larger aspects of the surgery, there were a couple of smaller side effects that were unexpectedly painful.

  • Sneezing and laughing. While it might seem very random, yes, for the first few days at home sneezing and laughing will hurt. However, this quickly goes away as you heal and it is very short term.
  • The process of lying down can also be surprisingly painful. The easiest and most painless way to lie down is to have somebody hold your back and simply just have them lower you down. This allows for the person to do all the work, putting no strain on your sensitive chest muscles.
Returning to School

Depending on when you have your surgery, there is a chance some of the restrictions will get in the way of your day-to-day school life.

  • When you go back to school, have a couple of "wingmen" -- friends who understand your surgery and will help carry your books, etc. One restriction I had to deal with was not being able to carry a backpack, but I had friends who helped me carry my stuff, and it worked out great.
  • Ask teachers if you can have a second set of textbooks that you can just leave at home, rather than carrying them back and forth.
  • In general, try and stay aware of your physical surroundings and the situation you could be putting yourself in, making sure to always protect your chest.
  • For the first few months after surgery, you will likely need to miss out on physical education class, recess, sports, etc. While this can be frustrating, keep in mind that the most important thing you can do is keep yourself healthy to make a full recovery.
Participating in Sports

Being very involved in sports, I learned all about taking the right precautionary measures, while still getting to do what I love. It took a lot of adjusting to get to the place I wanted to be. I played soccer, basketball, and tennis, and there were a couple of things that worked well for me.

  • Be open minded. During my freshman soccer season, I ended up constantly changing my position while trying to figure out what would work best with the bar in my chest. At first, I was very opposed to the idea of not playing defense anymore, but as I started experimenting with other positions, I found that playing right wing was both a position I was better at, and a significantly safer option.
  • Communicate with coaches to make sure they know about your surgery, and the limitations you may have.
  • Protective chest braces can be a great solution if you are anxious about activities involving the bar. Amazon and POC are great places to find chest braces.
Disclaimer: This information is not intended to substitute or replace medical advice from your child’s physician. The content provided is for informational purposes only.

Source: https://www.chkd.org/Blog/Recovering-from-the-Nuss-Procedure--Tips-from-the-Patient-Perspective/

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