Jul 24, 2018 Latest post:
Sep 25, 2018
The backstory in a nutshell....
Knowing we will have a lot of people praying for Joe and wondering what's going on, I felt a Caringbridge would be the easiest way to keep everyone up to date.
When Joe was about 7 we started to notice that his chest was slightly concave. Actually, a family friend noticed. At the time I took note to be sure to mention at his next check up. From that point we just kept a loose tab on the issue, and weren't overly concerned. As he grew and puberty hit, his chest started to dramatically grow inward, affecting his posture among other things. A couple years ago he was complaining of random heart rate spikes - like loafing around watching TV and his heart would race at 180 beats per minute. A visit to a pediatric cardiologist basically said it's not normal, but not dangerous not normal. Oh...okay then. We started to hear about kids with a similar condition (Pectus Excavatum) having a surgery where a bar is inserted to correct the problem. At that time, it didn't seem medically necessary, so to the back burner the issue went.
Last summer I learned that a friend of mine has a son who had the Pectus surgery at Mayo and spoke very highly of the surgeon, the experience, recovery, and ultimately the success of the procedure. We scheduled a consult with the same surgeon, Dr. Moir. At the outset we (Mark, Joe and I) agreed that we wouldn't do this so Joe would have a better looking chest - he's already adorable just the way he is, so the Mayo would have to prove that this surgery was 100% medically necessary. His lung function test showed that he had the capacity of a 55 year old couch potato. Joe is far from being a potato - a runner, and an active kid. And the chest x-ray showed how his heart was being squashed fully into the left half of his chest cavity and being deformed by how concave his chest had grown. When he's out running he reaches his max heart rate so much faster because of this condition, and he tuckers out much sooner. Dr. Moir and his assistant Penny gave us nearly 3 hours to discuss the medical necessity of the surgery, answered all our questions and we left feeling at complete peace that this was the right place (it's the Mayo for Pete Sake!!) at just the right time (he is nearly outside the window because he's almost done growing...which is good because he's nearly 6'3 and finding pants that fit right is already an issue) in his life to proceed with the surgery.
The surgery will take place on August 14 down at the Mayo in Rochester with Dr. Moir. Dr. Moir trained under the surgeon (Dr. Nuss) that invented this particular surgery. He's done more Nuss Bar surgeries than anyone in the US (cool). The surgery will take about 3.5 hours, where they will insert a steel bar called a Nuss Bar, and it will be attached on one side of his rib cage, threaded over his lungs and heart and attach to the other side of his ribs. His chest will be instantly corrected...that said, this is where the pain factor comes in. Think of it this way, an orthodontist can put your braces on your teeth and straighten them in an hour. Instead they correct the teeth over a period of two years, disbursing the pain over that period of time. With this surgery, Joe will be instantly corrected, so all the pain is front loaded. Here again, the Mayo is leading and cutting edge with pain management - he will be coming home after just 2 or 3 days post surgery with a Lidocaine drip inserted under the skin to manage the pain - minimizing the use of high test pain killers. The first month will be tough, and I'm afraid nothing can fully prepare Joe, or us for this...only the experience of it all will determine this. He won't be able to use his arms for much, including and especially, when sitting up or standing. The bar will remain in place for about 5 years, and will require surgery again to remove it - but a much easier one and quicker recovery (just a week or two).
What we'd love from you: Prayers to cover Joe. Specifically, pray for the skills of the surgeons and staff working on Joe, for his body to be free from all infection, successful pain management, and overall success of procedure and healing. We know God's got this!!
Thanks for praying, trusting God...fixing our eyes on Jesus and not the wind and the waves...