Perfect Chaos

This is “supposed to be” the scariest phase of my life, but I haven’t felt so at peace in years. I promised to write a blog about the crazy cool signs that God has given my family to assure us that we are on the right path. Many friends might call them “spooky coincidences,” but I feel it’s all beyond that. Bullet points are more fun to read:

  • I wasn’t really in the code red danger zone back in June. I was going down that path, but there was no immediate crisis. In fact, I was pretty excited on June 22nd when I went to the hospital, as I was being admitted for cochlear implant placement (devices that help the deaf hear). But that day in the clinic, my doctor said she felt she needed to tell us that we need to prepare to move out of Hawaii. 
  • She (seemingly) randomly told us that if I were to be put on a ventilator (machine that breathes for you), there’s nothing the hospital could do to save me due to a lack of resources in comparison to a mainland hospital. This was the first time we had ever heard that. She also brought up lung transplantation. 
  • Remember, I was just there to get my cochlear implants placed. My doctor said we should hold off on the surgery and instead focus on getting my lungs healthier. While a little sick feeling, I didn’t think I was in enough danger to justify talking about a ventilator, much less a lung transplant! Those things were years down the road in my mind. 
  • I was put in the pediatrics ICU for admission not because I was critically ill, but because I was going to start sleeping with a BIPAP on. They wanted to keep me there just to monitor things. My family thought that was kind of extreme, as I had tried the BIPAP before and didn’t have any trouble. We didn’t really feel we got a good answer as to why I had to be in the ICU, but we decided not to pursue the topic.
  • Just to make things seem even weirder, I was told to fill out my advanced directives. I laughed about it with my parents and started filling it out just because I was bored. I actually wasn’t taking it seriously (Q: “Things that would make you feel better if unable to communicate?” A: “Letting cats in my room.”). I only filled out a couple pages (important to remember!) before setting it aside to watch Food Network. I didn’t touch it again.
  • A couple nights later, I noticed my heart was racing. I didn’t feel sick otherwise, but something just felt wrong. I kept telling my parents over and over that something bad was about to happen. A student doctor insisted I was just having anxiety, but I knew what anxiety felt like and that wasn’t it. He gave me some medicine to help me sleep.

**My memory is blurry after that, so much of the rest I got from my family and Kristina.**

  • A nurse (Nurse 1) who wasn’t in charge of me (the one who was will be called Nurse 2) said something was wrong while I slept that night. Nurse 1 poked her head in and said to my mom and Nurse 2, “He’s in distress, call the doctors.” Nurse 2 said, “He looks the same as he has all night.” Mom said, “He always breathes hard like that.” Nurse 1 insisted something was wrong and said to check my CO2 level. At the time, my mom was irritated with her and thinking she should mind her own business. She alerted the doctors and they confirmed it was an emergency situation. (A week later, my mom thanked Nurse 1 and she started crying. She said, “I know I can be annoying because I get kinda pushy.” Thank goodness she’s pushy!)
  • Turns out, I had a blood infection. A bunch of CO2 rushed to my brain and my body went into septic shock. My family was told I had a 50/50 chance of dying. 
  • The student doctor was insistent upon me being put on a ventilator. My mom started thinking back to just a couple days before when my primary doctor mentioned that I would be beyond saving if ever put on a ventilator while in Hawaii. She argued against the decision, but I was an adult so she wasn’t in charge of making decisions for me. Or so it was thought…
  • Turns out, one of the couple pages I filled out in the advanced directive named my mom for making any medical decisions if I was unable (I wasn’t conscious at this time, so this applied). This might very well have saved my life. Also, my dad had went home to rest that night. At 2:30 a.m., I began acting erratic, so my mom called my dad at home and asked him to come help. He walked in my room within five minutes of the student doctor telling me he was putting me on the vent. My mom believes it was God’s way of getting him there to support me and to be a voice with her in saying no to the ventilator.
  • Also, my primary doctor was awesome enough to answer the phone at 3 a.m. to help my mom. Another doctor in the ICU came up with a plan with my primary doctor to keep me off the ventilator. My primary doctor said I was very fortunate he was on staff that night because of his skill.
  • According to that doctor, we were also lucky we were in the pediatrics ICU instead of the adult one, as in the adult ICU, it’s protocol to automatically put a patient on the ventilator in such a crisis.
  • Remember: We didn’t even think I should have been in the ICU before all this. I was just there to be monitored while on the BIPAP. If I hadn’t been there, that nurse wouldn’t have come in to point out the emergency, and that awesome doctor wouldn’t have been there to come up with a Plan B. Even crazier: My doctors believe the infection had been in my blood unnoticed for months but flared up while in the ICU. What if I hadn’t been in the ICU when it flared up? Additionally, my family was all supposed to be out of the country (Belarus and the Philippines) a week after this time. What if I had been home alone during this crisis? Cherry on top: I wasn’t even supposed to be in the hospital for another week or so. I was admitted early just because a slot opened up on the surgeon’s schedule.
  • Kristina was obviously very distressed during this time, but she opened her Bible to a page she had bookmarked months before. On that page was Job 33:19-33, which talks about a dying man on his sickbed, wasting away without hope. But then an angel saves him and he is filled with an incredible joy that he has to tell the world about (*points at blog title*). I had told Kristina to read Job months before because I told her it always made me feel better when things got rough. Good thing she bookmarked it!
  • Once things chilled, we were told we definitely need to move. Thankfully, we had already started this planning thanks to the talk my doctor had given us days before. We had already reached out to hospitals about lung transplantation, which had resulted in many rejections (due to a bacteria I have, which can complicate transplants). Turns out only one hospital in the country, the University of California, San Francisco, is willing to evaluate me. Cool thing: UCSF has a higher-than-average survival rate for lung transplantation.
  • The cystic fibrosis doctor on the transplant team just so happens to be the father of someone who has cochlear implants, so he expressed his desire for me to get both new lungs and new “ears.” How cool is that? I had been afraid talks of implants would be totally ceased while facing the huge task of lung transplantation. 
  • Getting a lung transplant can be crazy expensive and not all insurance will cover it. Thankfully, military insurance is amazing. But I only have my dad’s military insurance until I’m 26. Might as well have the transplant when it won’t make me broke!
  • I don’t know. Things have just been amazing in the Bay Area. I love this place so much and haven’t felt homesick in the slightest (although I miss the people!). This is unusual for me. I’ve endured many moves thanks to college and being a military brat and I handled them all terribly for the first weeks, months, or even years. I could have been evaluated by a hospital in a much, much less-cool place.

There are lots of other big things that have happened that I can’t talk about due to confidentiality, but trust me, it’s some really cool stuff.

How could such terrible circumstances go so perfectly? I don’t know what happens from here, but I do think we are right where God wants us. You might question why such terrible things would happen in the first place, but I do believe that I will be strengthened through this all. With new lungs, I will be able to breathe again and my testimony will only be stronger.