SURGEON CALL....

1 worn out kiddo.

This evening the surgeon who will be repairing Jaime's pectus called. We had a fairly long conversation. He confirmed the severity of Jaime's pectus excavatum and said that we were doing all of the right steps needed to get to the OR. He also expressed his concerns about the bar fitting into Jaime's chest because he is so little. He said the length can change, but the width cannot. I think that I've explained before that this surgery is usually done between 8-12 yrs old (sometimes even older). Jaime is VERY young for such a thing. The consensus is for us to move forward with the testing. Jaime is set to go back to Cincinnati 2 times next month for allergy testing. He has to have a patch placed and then later that week he has to go back and have it read. The test is to see if he will have an adverse reaction to the metal that will be placed into his chest. Once that is completed, they can compile all of the tests and submit them with a request for approval to the insurance company. I'm soooooo hoping we have enough "evidence" of the importance of Jaime having this surgery for it to be approved. Traditionally, many have known this to be a "cosmetic procedure" and only the severest of cases would get insurance approval. I think that in more recent years, they are noticing a difference in the quality of life for those who suffer from a severe pectus excavatum, regardless of other medical issues (in which Jaime clearly has).
In the meantime, the surgeon is going to consult with the cardiologist and pulmonologist. He would like to get their opinions on timing. He wants to see if they feel he can wait until NEXT YEAR (or later) to have the surgery. Again, his concern is the bar fitting. He HAS done surgery on kiddos as young as Jaime, but he's very little. He'd like for his chest to be a bit more substantial, if possible. Growth is like a doubled edge sword....he needs to grow for surgery (for better bar fitting) and the more he grows the worse his symptoms become. When I talk of symptoms, I speak of exhaustion (as seen in his pic...after literally doing NOTHING all day), shortness of breath, increased reflux, episodes of low blood pressure and very low endurance. He has days where he's GREAT and goes forever, but the days following those GREAT DAYS are days of laying around from exhaustion. Then he has days like today, simply exhausted all day, from literally nothing. Last night, he asked for a breathing treatment, just to make him "feel better." Personally, waiting until next year worries me, but I trust ALL of his drs to make the best decision for Jaime, as they have these past 5 years. If they say waiting will make a better outcome for his pectus surgery, then we wait, if not, then we move forward with insurance and a surgery date! Fingers crossed for finding the right answer to improve Jaime's future quality of life!