Milly, Milly! You are never far from my thoughts. My sweet, precious friend! We met via your YouTube channel when you and I were both recently diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Your love for life and love for Jesus always inspired me. When my "POTS" started attacking my GI tract, I was so grateful you could still eat. A year later, I grieved with you and tried to comfort you when your "POTS" started affecting your GI tract. I was so grateful after all the advice you had given me, I could now help you along your journey with feeding tubes and IV nutrition.
Our "POTS" seemed to mysteriously affect our muscles. You require the use of a wheelchair before me. I am so grateful for your incredible YouTube video about how to purchase the correct wheelchair. I admired your wheelchair and all the cool moves you could do. A short time after you got your wheelchair, I too needed a wheelchair. I was always a little envious of your arm muscle strength to be able to do fancy tricks in your chair. I was just grateful when I had enough muscle strength to propel my chair down the hall.
During this time, I was diagnosed with Mitochondrial Disease. I wondered if perhaps you, too, suffered from the same disease. I was very grateful when your doctors started you on supplements to help with energy production. I was happy and yet sad to learn when you received a confirmation that indeed you did have Mitochondrial Disease. It seemed from the moment you received your diagnosis, your disease progressed rapidly.
Soon, you were having difficulty breathing and were started on BiPAP. Soon, you were using your BiPAP machine 24/7. Despite your severe shortness of breath, you managed to post two videos about your respiratory issues. I have viewed these videos many times searching for information about using the BiPAP machine.
Your mom's account of your final days on earth: You were struggling to breathe. You developed a fever and were going in and out of consciousness. Your parents and doctors thought you had developed another infection in your central line. The doctor came to your home to do a blood culture. You had made an agreement with your family not to go to the hospital if you developed sepsis. Your breathing continued to be labored during the night, and then you went Home to be with Jesus. The death report says you died of sepsis, but when the lab report came back it said you did not have a blood infection. No, you died from respiratory failure.
As I read this man's question about if I had ever fallen asleep and could not be woken up, I think of you Milly! You were in respiratory failure. Why didn't you get a trach? Oh the suffering you endured! A trach would have lessen your struggle to breathe. I know you are in heaven and now free from this tormenting disease, but I just want you to know, I will not follow you this time. I am not ready to leave this world quite yet. I still have a lot of fight left in me. I just wanted to let you know I am going to get a tracheostomy.
Gripping account of such heroic efforts- fight on!
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