The past week all the words that have poured out of heart and mind have been lost. We have been stuck in this place of limbo with Von’s health. There is a definite need to move forward, but we do not have all the information in order to have surgery. There is nothing harder for me as a parent to continuously find new diagnosis every time we visit a doctor. Each diagnosis is more and more complex, and it is starting to unveil the disease that seems to be ravaging my son’s body. The past week it’s been non-stop worry, panic, anxiety, stomach turning and sleepless nights. There doesn’t appear to be an end in sight.
I have these dreams where everything will be fixed, and we will never have to deal with another surgery or diagnosis. Then I wake up, and I realize that we are fighting a battle that we will never win. Every surgery and every medication we give to him is a band aid that is just prolonging the next diagnosis. This doesn’t mean I have given up, but it’s a reality that I have come to terms with this week. It’s been a very hard pill to swallow. There have been times this week I’ve felt suffocated by this illness, and I am still desperately searching for the allusive name.
The doctors have become more and more confident that Von has a connective tissue disorder. Now the cardiologist suggested that we need to test to determine what disease it is. There are numerous connective tissue disorders. What doctors know is the the disorders cause issues to how the body binds protein and how collagen exists in the tissue. For many there simply isn’t enough collagen – or the collagen isn’t binding properly and thus the tissue becomes floppy and unable to support the various parts of the body. For many the syndrome impacts their joints and skin most commonly. In cases like Von it can impact the brain and heart. The disorder can basically cause issue with any tissue in the body, and since the body is composed of TISSUE it can impact every part of the body.
When Von had surgery on his mouth this week, the dentist noted his gums were tender and looked red. She said that gum disease is common in connective tissue disorders, and we know that Von’s teeth were so decayed that he needed to have 8 crowns put on his teeth. His left back molar was so infected it had to be extracted. The infection ran so deep that it went through the entire tooth. It appears that no part of Von’s body is immune to the tissue disorder, and we will have a lifetime of diagnosis and issues that will pop up along the way.
I have joined a few communities for people with diseases that impact tissue, and I am learning and soaking in much about the disease. The good news is that while it does ravage the bodies tissue, there is a lot that can be done to help increase the quality of life. Heart surgery, brain surgery, and medications can be given to help with the various issues that pop up along the way. I reached out to others dealing with a vascular form of the disease, and have learned that while it does pose some restrictions in life, most can lead a relatively normal life. I’m scared but I’m hopeful for Von. This disease is intense, and it is serious, but I know he’s strong and determined.
We have an international team of doctors that are doing everything they can to help him thrive, and they are doing what they can to stay on top of his issues. The cardiologist was very encouraging when he discussed the protocol they need to take before his surgeons will operate. We hope everything will go smoothly with the surgery, and we are praying that after surgery we can have a string of time without additional diagnosis. There are some things that will need careful monitoring, and we remain hopeful Von’s neurological issues will not need intervention for quite some time.
This has been the most difficult 6 months of my life. I truly have been on my knees in agony and sadness. There have been more tears cried this past 6 months than ever in my life. As we get closer to a diagnosis, the fear of there never being a cure weighs heavy on my heart. We are encouraged by the outpouring of love and support from friends and family. We appreciate the kindness shown by strangers. We will continue to document this journey here and on youtube. Please check out our videos 🙂