My second life threatening experience: Hypercapnia and Respiratory Acidosis.

Hi everyone, 

 

This is about my second life-threatening health emergency I survived.

In May 2000, I was 18 and had my high school Senior Senior Prom. They held it at the Hyannis Sheraton hotel in Hyannis, Massachusetts (now known as The Resort and Conference Center in Hyannis). I went by myself because I wasn’t sure anyone would want to go with me. There was someone I should have asked. Jenny Gervelis I should have asked you. You were always an absolute sweetheart to me and a good friend. Anyway, at the Prom, my friends, their dates (now wives), and I all sat at the same table where we had dinner. Afterwards the dance floor was open to people to.. well dance lol. About an hour into it, I noticed it was getting really hot in there. I swear it had to be around 85 degrees in the function hall and there didn’t appear to be a way to open the windows. We were all in an oven. 

Around 11:30 PM, the Prom came to a close. Everyone went either to a hotel room, home, or to the after-prom party. I planned on going to the after party, but I went home first to change into regular clothes. I noticed as I was crossing the parking lot I felt a little fatigued, a lot more than usual. But I thought nothing of it and continued to go home and then to the Dennis-Yarmouth Regional High School where the party was being held. It was a pretty great party! In the gym, they had a bouncy house and a slide into a ball pit. In the corridor, they had several arcade games. They had food in the cafeteria (not sure where else it would be lol), and movies in the Auditorium. My aide Greg took one for the team and went along with me the whole night (it ended at 6:30 AM). We got something to eat and then watched the movies in the Auditorium. It was Austin Powers... yuck! and the Sixth Sense, which I already saw, and that’s a movie you can only see once. I had the greatest action/sci-fi/horror film in existence, Aliens, in my backpack. I should have asked the media production guy to let us watch that instead of Austin fucking Powers. The entire night I was downing Coca-Cola and caffeinated black tea. Probably the worst thing to drink. Anyway, the morning came, and the party ended and everyone went home. My mom picked me up in our shitty Plymouth Grand Voyager handicapped van and we went straight home. I felt accomplished because I was born with a terminal illness and I made it to senior year and prom. I got home and tried to get some sleep.

I woke up about two hours later, and I couldn’t sleep. So I got up and hung out with my aunt Tricia and my 2yr old brother James. I was so tired yet couldn’t sleep. That night I slept really well. The next day we had to go up to Middleton, MA, for my cousin Molly’s kindergarten recital at Middleton Elementary School. The ride up my breathing seemed way off and at the school, the AC wasn’t working and it was hot as hell inside. I had to go outside because I felt like I was being asphyxiated. On the way home we stopped at Best Buy because I was a big gamer back then too and they released the game Resident Evil Code Veronica that day and I was picking up a pre-ordered copy. Again, that night I slept very well. The next day, I have school early in the morning. Now I had a bad habit of falling asleep in my first class which was English and the teacher, Miss Smith, usually had to wake me up lol. Well, on this day, Smith was in an incredibly shitty mood. I was also having trouble that day staying awake for anything. She was yelling at the class about something and I nodded off. She turned her attention to me and yelled at me to wake up, which almost gave me a fucking heart attack. At the end of class she stops me from leaving the room and says something like “I don’t appreciate you sleeping in my class” I say “I’m sorry I can’t help it I don’t know what’s going on” and in a tone that I took as sarcasm she says “then what are you doing here?”. I was like a real bitch? Like I have a choice.... My mom was a newly single mother raising a disabled teenager and an ornery 2-year-old. She had to work and if I’m at home, how the fuck was she supposed to do that? I didn’t say any of that, by the way lol. If I did, her insensitive response would be it’s not her problem. Clearly, I wasn’t doing good. Instead of being a miserable bitch, how about you send me to the nurse? I wasn’t a normal student. I had severe underlying health issues, which she knew. Anyway, I left the room without telling her to go straight to hell, back to her own kind. So, the next day I started bringing caffeinated tea to school in a big insulated cup so I could keep myself awake. I feared that if she started on me again, I probably would have been suspended by calling her a bitch. It was helping a little, but I felt like shit. The following day was a Wednesday and my aide Beth was here at home after school. She noticed I was breathing rapidly and my heart was racing. I had recently been put on a blood pressure medication and I thought I had to take one of the pills because maybe it would slow down the heartbeat. She wasn’t really supposed to give me those and I wasn’t going to make her do something she was uncomfortable with. Eventually that night it subsided and, like with the pneumonia, I felt good in the morning. Even still my mom contacted my Pediatrician in Hyannis and made an appointment for Friday at noon. I told Miss Smith that I was leaving early and she was like “Oh you’re leaving during my class?” I was like Fuck You lady(in my head). Mom came and picked me up and we drove to Hyannis. They began doing some tests and administered a nebulizer in case I had Pneumonia again. They couldn’t find anything wrong with me but they could clearly see something was off. They decided to be cautious and told us to go to Boston Childrens Hospital. It was a good thing they did.

Mom and I get to Boston and leave the shitbox to the valet... poor guy having to drive that... Anyway, they sent us to Cardiology to do EKGs, Ultrasounds, blood tests, and I think they did several X-rays. Still, they couldn’t pinpoint whatever the hell was wrong with me. Finally, they were like we can’t find anything, so I guess we’ll send you home. As we were waiting for the elevator, the doctor came over to us and said while they couldn’t find anything; he was very uncomfortable about it. So he sends us down to the Emergency Department to see one more person who was basically a respiratory genius. He looks at my blood test results and was like it’s really good you came up here when you did. He admitted us and immediately started me on a BiPap machine. Unfortunately, there were no rooms at Childrens at the time they were all occupied. They sent me to the ICU at Boston Medical Center and they got me in a room there. I had to use the BiPap that night, which I didn’t like because it was a strange sensation and I felt like it was sucking the air out of me. So, about halfway through the night, they took it off. It was probably not a good idea. I wake up the next morning feeling like shit. I got up in my chair and I was becoming irritable and disoriented. At one point, my mom goes to grab a smoke. The nurse comes in and says something to me and I reply with “fuck you bitch”,, which isn’t me, and then started saying “shit” repeatedly. Now I don’t remember any of this. But I guess the nurse was understandably angry and upset at my outburst. She asks my mom if I normally speak to people like that and my mom says she’s never heard me say anything like that to anyone. Mom comes in and I remember her asking why I was upset. I didn’t know what the hell happened and said I wasn’t upset. Then I asked to get back into bed. I don’t remember the next four hours. According to my mom, aunt, and several nurses who witnessed it. As soon as I lay down, my body seized up and my eyes rolled back into my head. The heart monitor registered a heart rate of 250 bpm. Normally it’s between 60 and 100 bpm, so my heart was on the verge of exploding. After a few minutes, my heart rate dropped to normal, but I was out cold. 

When someone has DMD, like myself, the muscle responsible for respiration called the Diaphragm gets weaker. So we have trouble removing excess Carbon Dioxide from our lungs. This is known as hypercapnia and can lead to Respiratory Acidosis. Respiratory Acidosis is when the buildup of C02 in the blood causes the blood and other bodily fluids to become acidic. Symptoms of RA are confusion, fatigue, lethargy, shortness of breath, and sleepiness. If untreated, it can be fatal. I had been suffering from all those symptoms all week and I became disoriented right before the seizure, which is why I told the nurse off and didn’t remember.

Four hours later, I woke up surrounded by family and EMTs. The EMTs were there to move me back to the Children’s Hospital ICU, where a room had become available. I was intubated so I couldn’t speak. The DMD wasn’t as advanced as it is now and I still had the use of my hands. I asked for a pen or pencil and a notepad and wrote, “What happened and where am I?”. My mom explained I had a seizure from C02 build up and was probably going to be in the hospital for a couple weeks. I was concerned because HS graduation was a month away and I didn’t want to miss it. The only good thing about it was I had a paper due for the English teacher the Monday coming up and I hadn’t even written a goddamn word of it. So I was off the hook! 

I spent a week in the Pulmonary ICU at Childrens. The episode happened on a Saturday and by Tuesday I was extubated (tube pulled out of my trachea). It was the most boring experience in the hospital. Every day, I watched the clock tick by. On Friday, they moved me down to a normal room on one of the patient floors. I spent another week in there and had some family and friends and even some of my teachers came to visit. They also gave me access to an actual TV with cable, so I wasn’t just watching the clock. By that Friday, they discharged me from the hospital. They gave me a pulse oximeter, an oxygen concentrator, and my own BiPap machine, which I started using at night when I got home. 

Two weeks later, I went back for the last three days of school and I received my yearbook, which I had Jenny G. sign because she was a good friend. The following day was June 10, 2000, and I rolled up on the stage and got my diploma from our principal, Mr. Jenks (✝️👆❤️). I received a standing ovation from my classmates and friends, which brought a tear to my eyes. I was so happy I could attend my graduation.