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!! 

Last Minute Trip

Ryan ended up with 2 days of unexpected time off in July!   We decided to take an impromptu road trip.  

We went to Sedona, AZ.  Which is beautiful country.  But it didn't speak to my heart as much as the red rocks of Southern Ut, my home. 

Slide rock state park is beautiful and fun and has some interesting history. 

It was early homestead property that the state later acquired and turned into a state park. 

It was really busy and crowded, but you didn't really notice after you got settled in and started sliding down the rocks in the river. 

The rocks were slippery, the water was a bit too brisk for my liking, and the current, swift.  The cold water took our breath away--but it was quite fun!!!  We got there late in the day and felt a bit rushed.  It closes at 5:00PM and I think we arrived around 3:45-4:00pm.

The parts you can slide on run for about 50-100 yards --I would guess.

Here's a look at what I'm talking about--slits in the rock that make slides and ditches that the current carries you down. 

Jace agreed with me-it was super cold.  He's like me-not a fan of cold water. In reality I would guess the water was around  70 degrees.  We keep our pool at 87-89  degrees- so that's like ice water to us Arizona peeps. 

Here is the history.  My paternal grandfather was a homesteader in St George Ut.  After he died, the state pressured my poor grandmother into selling her families homestead.  She didn't want to sell it, but finally felt she couldn't fight the state anymore.  It is now Snows Canyon State Park in Southern Utah.  So I have tender feelings for the homesteaders of the early 1900s.  It was hard, but rewarding work. 

This is the original homestead house, still on the property. I'm glad this place has been preserved, and I'm glad it's open for all to enjoy--because it really was a slice of heaven on earth. It was beautiful. 

We stayed at a place called Orchard Canyon on Oak Creek Cabins. The property had several cabins for rent and then a few acres of orchards and common areas to enjoy. The property itself was beautiful, and temperate.  Acres and orchards to stroll in, and the creek was on the property.  At night they lit it up with white hanging lights.  The cabins themselves, needed updating.  

It was just a mile up Oak Creek from slide Rock.  But the creek here was much different than farther down. It was cool and serene with gray rocks, not red.  Amazing that is can change  so much a mile upstream.

That evening while we were enjoying dinner and the property, our phones started going crazy with calls and texts.  Lightening had struck in Kingman AZ and a wildfire had started near our property and goose habitat. If I haven't mentioned it before, we own 60 acres of empty desert land just 5 minutes from our neighborhood.  We built a mini farm there and moved our pet geese there-because Dr Swigert hated the messy geese in his back yard.  And messy they were- but also vocal and very delightful!

Here are pictures friends sent us.  It started in the afternoon and moved close to residential areas by nightfall. But no houses were lost!!!  and the firefighters saved our structures!!

This picture shows the fire right on our land. Of course this happens when we are out of town!

This was the next morning. This is our No Trespassing sign the Ryan's dad "Poppy" put up for us. It wasn't even singed.  He was worried we'd  have theft on our isolated desert oasis, but it has been fine. 

 The containers that store the well equipment, and tractor, were safe and sound!   A blessing!!

It came right up to the geese's fence!   About 70-to  80% of our land was black.  Luckily it was just sage brush.  No great loss. 

But all was intact! And  the geese told me all about it when I went out to check on them when we got home. I wish I could have seen them during the ordeal.  I'm curious to know if they went to their pond, and hunkered down in it for safety?  I guess I'll never know. 

Day 2 of our little trip was a 7.4 mile hike in the July heat of AZ!    Everyone should do that at least once in their lifetime!  We had hopes of starting early, but you know how it goes with 5 people trying to get ready in 1 small bathroom, and then all the last minute things we thought to do. We got to the trailhead around 9:30AM and it was already 99 degrees.  Gracie melts really quickly in the heat.  

We carried lots of water and wore those cooling rags on our heads and necks, but they dried out really quickly. But it was ONLY a 3.2 mile hike into Beaver Creek.  We were headed for this popular spot that is known for its deep pools and jumping ledges. 

I was eager to go- because of the red rock.  It reminds me of home.  

The water was warmer than slide rock and the place was really quite pretty.  All the college kids that were there when we arrived around 1 pm were getting ready to leave for the day.  So we mostly had the place to ourselves. 

Yes-we all jumped off this 20 foot ledge into the water below.  Well, Kjersti decided it wasn't for her. 

Dr Swigert crossed over to the other side here and jumped off the 30 foot ledge.  I only took a video of that--oh well.  It was fun, but I learned that I have a 50 year old body now, not a 20 year old body.  As much as I love the thrill of jumping off those heights into the water below, it was hard on me.  I only did it a few times.    If I was still 20, I would have done it over and over and over again, just like I did growing up in my beloved Washington Fields Canal.  

Gracie is a smart one.  She prayed for clouds to come for the hike out and guess what--we left around 4 pm because it was indeed cloudy!!

You can tell by her smile she is doing much better on the hike out. 

On the way out  we found what is now called Kjersti's barf rock.  She got heat stroke on the way in and barfed!!!!  Luckily it was all dried up when we came back down, and the ants were enjoying a feast of regurgitated grapes!