The lesson tonight in our Growing Kids God’s Way class was titled “Rejection: Man’s Greatest Fear”. The lesson Gary Ezzo delivered in the video ended with a point that could not have been more divinely placed in our lives today. “”Take inventory.” While Mr. Ezzo gave this suggestion in the context of the fear of rejection in our relationships. While we did not face rejection today we faced one of the most depressing and defeating days we have experienced in a long while.
Today we took Caden to MUSC. We visited the Orthopedic Surgeon. There Caden’s spine was x-rayed before we met with the surgeon to talk about the diagnosis of scoliosis. The surgeon basically told us that the time has come to ready ourselves for surgery. The surgeon sees the curves in Caden’s back  reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs. The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine. We have an appointment to meet with the surgeon again in late July to discuss this further.
From that appointment we made our way to the new cafeteria. We had lunch and ran into our favorite nurse from all the years we have spent at MUSC in and our of the PCICU. Nurse Kay was the nurse who broke the rules ICU rules that says no one under 13 years of age is allowed. She allowed us to bring 2 year old Riley into the PCICU to meet his 5 day old little brother Caden. We learned some time later that Caden was no expected to live through the complex open-heart surgery scheduled for the next day. The nurse was not certain that Riley would ever get to see his little brother alive if not allowed to visit that day. Seeing Kay
We left lunch and went up to the main MUSC hospital radiology department. There Caden went through a Modified Barium Swallow (MBS). The results of the MBS were not what we had hoped and prayed for leading up to today. The MBS results were unchanged from any we have seen since Caden’s birth. Tears welled up in my eyes as Caden climbed from in front of the video fluoroscopy and squeezed my neck. He heard the results and all the folks in the room could say was that they were sorry, they were sorry that they could not deliver better news.
We then went to meet with Caden’s ENT who performed the cricopharyngeal myotomy just over two weeks ago. He said that all had been done surgically and that anatomically Caden should be swallowing. He said that this is just one of those 22q11.2 things where Caden is not following the rules in the medical journals. The ENT ended with a recommendation for some monitored feeding therapy over the next two months and then we would reevaluate things. This therapy is to try and teach Caden some swallowing functions that should help push stuff past the Upper Esophageal Sphincter (UES). If we can prove Caden has the physical ability to get food past the UES then he will be much more likely to be a candidate for a more aggressive feeding and swallowing therapy like the one we have looked at in New Jersey. Right now Caden’s ENT does not think Caden would be accepted into an aggressive feeding and swallowing program since he has never shown any signs of passing a bolus through the UES in any of the previous swallow studies.
So this long day at MUSC left us in tears over Caden’s medical challenges once again. We came home where I got down on the floor and enjoyed playing cars with all three of our boys while Sherry finished preparing the house for our class. After dinner Sherry and I sat and found ourselves in tears once again as Mr. Ezzo reminded us to “take inventory”. When feeling rejected, or defeated in our case, taking inventory of what you have rather than dwelling on what you are missing is great medicine and it is a message straight out of God’s word. I will paraphrase another line from Mr. Ezzo that rang true with us tonight, “Contentment is much more important than our worldly happiness.” Tonight we rejoice in what the Lord our God has given to us.