I am taking a few steps backwards today due to some of my followers emailing me and asking what happened between September and now? What happened is PROGRESSION! The word none of us wants to hear when it is associated with a disease. The word progression is like a 4 letter word to me. I JUST DON'T WANT TO HEAR IT!
I touched on it briefly in the previous post. How in October Carter really started to complain about chest pain and like someone was sitting on his chest at times. He felt as though he could not expand his lungs. He would be in the hallway at school with a friend and felt like he couldn't get enough air, he would get lightheaded and feel dizzy. Pressure on his chest. It was happening pretty often. At the same time he was complaining that he would get sharp shooting pains in his chest. Then in November he started to take longer naps after school. Yes, I said nap....side note...People with CMT get fatigued more than us, because they have to exert more energy than us. At the same time he started to have more leg pain, arm pain and foot pain.
After numerous calls, the doctors suggested that we see a cardiologist to check his heart, since he has had chest pain on and off for a few years and it was getting worse. We went to the Cardio doc and he said nope it all checks out. Next stop, my CMT support group! Yah! I posed all of Carter's symptoms to them and low and behold I got a lot of responses back. All pointing me to a pulmonologist. Several of them told me to get him in ASAP, that his phrenic nerve (the nerve that runs from your spinal cord to your diaphragm) might be weakening. My first thought was what? CMT is not supposed to affect your breathing right? Wrong again! I found out that some forms of CMT can affect your breathing and your vocal cords!!!!!! Thank God for my support group and for them recommending a pulmonologist who knows CMT!!
We went to see Dr. V on November 20th and that's when I heard that word, the 4 letter word, PROGRESSION. As Carter and I sat in his office after the tests I remember Dr. V saying unfortunately, Carter's CMT is progressing into his diaphragm. His phrenic nerve is weakening. He is at about 1/2 of what he should be at for a guy his age on some of these tests. To be honest I don't remember how the whole conversation went, I was in shock. All I kept thinking was the diaphragm controls your breathing, your diaphragm controls your breathing, you need it to survive. Then I saw Carter's face and knew right then, I had to pull it together for the both of us. I knew he was scared and quite frankly so was I.
Dr. V told us Carter would benefit from a bipap machine at night. This would allow his diaphragm to rest at night and then he would reap the benefits during the day. He wouldn't feel so tired and hopefully he wouldn't have as many episodes of breathlessness during the day. He also explained that there really isn't anything we can do to make it stronger. Its not the muscle itself, its the nerve. One small problem, we found out the insurance would not cover it! At least not at this time since Carter passed one test. He failed all the others, but because he failed one....no machine!
Then the battle began with insurance companies. At the same time Carter's legs were hurting more and more. Next stop, the neurologist and orthopedic doctors in early December and they both said the same word PROGRESSION. Yep, that nasty word again. We were told that Carter needed surgery and he needed to get AFO's to assist him with walking. We all decided to get second, third, fourth opinions on surgery just to make sure it will benefit him, not hinder him. Carter has been fighting wearing braces since he was diagnosed, but now he has accepted that they will only help him. We are all hoping the braces will help him maneuver stairs better, no more falling down them, and not tripping as much. I hope!
All of this leads us to this point. We just did a sleep study on Saturday which should help us get the bipap machine. Cross your fingers. We went to see an Orthotist to get his braces molded. He will need to have ones for the daytime and ones for night. :( We have a surgery plan but we are still working out the details. Even with insurance the costs are adding up and Zach still has to go in to see if his is progessing. Ugh!!!! Enough on that......can't go there right now.
We are taking one day at a time, loving each other with all our might and fighting this disease with everything we have. IT WILL NOT WIN!
We are trusting in the Lord and we know He will get us through this.
"Trust in the Lord with all your heart and lean not on your understanding; in all your ways submit to Him and He will set your paths straight." Proverbs 3:5-6
Until Next Time...................Stay Calm & Enjoy Your Loved Ones
Momma Hayes
Remember "STAY STRONG, BELIEVE"~ Carter Hayes
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