Pectus Excavatum

 Pectus Excavatum has become a familiar term in our household.    Ryan first learned about it years ago when he was completing  his surgical residency in Iowa.   

He kept expressing concern to me about it in our children, and I reassured him that I had it too, and it wasn't a big deal, etc.. But, thankfully, he didn't let the matter rest, and pursued getting them evaluated.

He learned that Dr.  David Notrica, based at the Phoenix Children's Hospital, was a world renowned pectus surgeon and located in our backyard!   His wait list is substantial. But, 12 months later, the kids saw him.  And then 6 months after that, it was summer, and time for pectus surgery. 

July 23rd, 2024 at 6 am, Gracie had to check in for surgery prep.  She was so nervous.  We felt so bad for her. She was so afraid she would wake up during the surgery. 

She was being brave. 

In her hospital gown!  She looks good in purple. 

This is Dr. Notrica.  Here he is going over everything she needs to expect.  It was too much for her.  I saw tears rolling down her cheeks. 

After he left, they brought in this dog-I forgot its name- to cheer her up and distract her. 

                                 Gracie loves dogs--so it helped!

They let in younger sister to also cheer her up!  Who  has pectus excavatum too.  We are one happy pectus family!  Ryan is the only one without pectus--and we all have it quite severely.  You might be wondering what Pectus is--I promise I will explain at the end of the post when I show the before and after pictures. 

In the next pre-op room Jace was also prepping for surgery. He was scheduled right after Gracie. 

Here she is-about to get wheeled into surgery.   Three hours later-we got the page--Gracie was finished.    During the wait time we went downstairs to eat, and then waited with Jace in his pre-op room. Ryan was reading To Kill a Mocking Bird  to him. I felt bad he couldn't have food or water during this time,  But he never complained. It was about noon when it was his turn. 

When we first saw Gracie in recovery, I was taken aback by how pale and grey she looked.  I wasn't expecting it. She looked dead. I felt my throat go tight and my heart leap when I first saw her.  That experience has caused me to feel so much empathy for parents that have lost a child. 

The anesthesia made her very emotional and she cried and cried. Mostly over the fact that she missed her dog Charlie and her cousins, and that vampires aren't real.   Ryan found it so entertaining. He chuckled and chuckled for about an hour while she went through the process of becoming more coherent. 

But of course he was at her side, holding her hand and stroking her forehead through the whole ordeal. 

Here you see Kjersti wiping a tear when she first saw her post- op sister.   She didn't expect Gracie to look so grey. 

One big awesome surprise-was the fact that her cousins--Breann and Aubrey--did come!  They flew down from St George to see her and spend 48 hours with her-while she was in the hospital. We were so humbled by their outpouring of love. 

Here is Jace all suited up.  These gowns were cool.  They had a tube that blew warm air onto their bodies. 

Jace getting his IV.  They had to try a few times.  I felt bad for him. 

                        Right before Gracie left for her surgery.

Jace was taken into surgery around 12:30pm. By 5 pm-Ryan was getting nervous. He still hadn't heard from the surgical team that Jace was finished.  All they would tell him was that Jace was in recovery.  But they wouldn't let us back yet. 

There was some mis communication-so that is why we weren't called back. 

Ryan was  relived to see him drowsy, but fine.  He was so worried that Jace was combative coming out of anesthesia, and that that was the reason we weren't allowed back. Ryan sedates his own patients and some go a bit crazy when they wake up. But he was like he always is-calm as a cucumber.

Pain meds are the greatest!!

Here Jace is overwhelmed with the intense pressure from the titanium bars.  You can see it in his face. 

Here are the 3 bars that will live inside Jace for about 4 years. Gracie only needed 2. 

They had hospital rooms right next to each other.  And Jace wanted to say hello from the doorway as they wheeled him by.  So cute.  They are good friends. 

Thumbs up ='s pain is manageable. 

Later that evening Jace developed a complication - a bilateral pneumothorax.  That's when air starts leaking from the lungs.  The nurse noted that he wasn't breathing deeply and Ryan confirmed it.  After that  observation--Ryan became a wreck.  They took Jace down for x-rays, etc.  Ryan slept in Jaces room that night and kept a close tab on him.  They heal on their own over time-usually and happen sometimes with this type of surgery.  Jaces surgery was complicated and long, so Dr. Notrica expected that this could happen. 

But they wanted those patients up and walking.  So, that's what we did.  We were a fair sized group walking the halls.  

They were in the hospital for 24-48 hours after surgery.  We ended up leaving the following evening. 

Jace was up and doing quite well the following morning.  Here you see them finishing their book  and eating breakfast. 

Gracie wsa a little more overwhelmed by the pressure in her chest.  She was miserable and didn't want to go home. But Ryan talked her into leaving that following evening. He wanted to get home, and the cousins had already headed back to Utah.  Ryan was so tired from sleeping in the hospital rooms and needed his own bed. 

So home we drove.  It's about 3.5 hours.  He timed it perfectly.  They got their evening dose of pain meds and then we left.  They slept the whole way home.  And we were all so happy to be home!!  There is something about the warm welcome of home that makes healing take place faster. 

Chest before surgery. 

Chest after surgery. 

They had the NUSS procedure.  In the past the repair involved breaking all the ribs and reshaping them. Now the repair is much less invasive and involves fitting titanium bars under the sternum that lift the sunken chest wall.  They are then bolted to the ribs and are inside for 3-4 years.  Then removed. 

Before Surgery Jace had a Haller index of 4.71 and had a lung and heart capacity at 60.1 % of normal. 

Gracie's Haller index was 4.58 and had a heart and lung capacity of 58.9 % of normal.

I have been measured and I have a a Haller index of 5.065.  My heart and lungs have not been evaluated yet.  It runs about $6500 out of pocket for the evaluation and takes 2 days in phoenix. So I'm gearing up.  For some reason our insurance didn't cover it with the kids either.  But they did cover a good portion of the surgeries. 

I will most likely not get the surgery.  It is not recommended for someone my age.  My ribs are old and brittle and they suspect that when they do the sternum lifting they will all crack or break and have to be plated. And I will live with chronic pain.

Jace and Gracie hobbled around our house for about 30 days like 90 year olds, stooped over.  They were adjusting to the weight of the titanium bars and the pressure.  It was an intense surgery. 

Learning about Pectus Excatum has been life changing for me.  I have lived a confused life. I have tried and tried to run a mile and never been able to. I am always short of breath and have very short endurance. I am always panting when I climb the stairs or exercise.  Hiking is a nightmare.  I have been so hard on myself  and wondered why, despite all the exercising I do, why  I can't do these things.  Being pregnant was so hard. I could not walk up my stairs without stoping on the landing to catch my breath.  I always felt so overwhelmed physically by the second trimester. I could not understand it and tried to alleviate it by having fitness trainers during the pregnancy etc.  Well, now that I'm 50-- I have the answer.  My heart and lungs are squished inside my chest wall. 

The higher the Haller index number the more severe the scoop is in the chest.  I am considered very severe. Anything over 3.25 is recommended to have corrective surgery. 

So, that's our news.  Pectus excavatum affects 1 in every 450 Americans-it pretty common and very genetic-so go look in the mirror and check out your kids!!!   The surgery deadline is 26 years old.  Then the ribs start getting too brittle!!