Happy 2nd Birthday to me!

On May 3, 2017, I was facing one of the biggest decisions of my life: should I undergo surgery to get a tracheostomy and use a ventilator to breathe? If I did not have the surgery, death was lurking in the shadows. My diaphragm muscles were nearly paralyzed. I was using mostly my accessory muscles to breathe. In addition to using a huge amount of energy to breathe, I was also fighting with all my might to stay conscious. Despite wearing a mask which was connected to a bilevel positive airway pressure (BiPAP) machine which forced air into my lungs, my carbon dioxide levels were dangerously high. It was only a matter of days, perhaps weeks in which high carbon dioxide levels would cause me to lose consciousness and ultimately slip off into eternity.

Although this decision may seem like a no-brainer to most people, for me, it was extremely difficult. I had vowed to myself that after I had my intestinal feeding tube removed in 2013, I would never have another invasive procedure done. Using the BiPAP machine only required me to wear a mask. I could remove the mask at any time and be free from any equipment. Getting a tracheostomy meant even if I disconnected from my ventilator, I would still have a plastic tube in my throat. Moreover, getting a tracheostomy meant that I would be hooked up to a ventilator for the rest of my life...yes, unless God decides to miraculously heals me, I will ALWAYS have to carry around a ventilator.

(Although it has been two years since I started using a ventilator, I still get emotionally choked up when I think about never being able to live my life without the use of a ventilator. Don't get me wrong, I am extremely grateful for technology and the ability to live my life free from the confines of a medical institution thanks to a portable ventilator, but I still emotionally struggle to accept the limitations of having respiratory failure.)

These last two years have been fraught with many challenges. My first tracheotomy tubes I used I was allergic to the materials from which they were made. Also, my first tracheostomy tubes were too long, which caused the end of the tracheostomy tube to dig into my trachea. This caused extreme irritation and damage to my trachea. Moreover, my body reacted to this constant irritation by causing my breathing to be extremely fast. So, despite being on a ventilator, I was constantly short of breath and gasping for air.

Additionally, I have had nine different bacteria take up residence in my respiratory tract. (I acquired my first bacterium when doctors were trying to figure out why my breathing was so fast. And from there, it has been one hospital acquired infection after another hospital acquired infection.) I have had to endure countless days in the hospital and have had endless tests and procedures done in an attempt to rid me of my bacterial infections. I have had two peripherally inserted central catheters (PICC lines) which allowed me to administer intravenous antibiotics at home. I had an anaphylactic reaction to one of the antibiotics. Other antibiotics caused other side effects such as Red Man Syndrome and dystonia attacks.

Despite all these challenges, I am grateful to God for guiding me through all these trials. He has over and over again allowed me to see His goodness, His mercies and His love in the midst of much chaos and loneliness. Although making the decision to get a tracheostomy was one of the hardest decisions of my life, I am grateful God has allowed me to live another two years. So with that, Happy 2nd Birthday to me! Praise be to God. Amen. Amen.