My third life threatening experience: Malnutrition and Pneumonia again.

Hi everyone,

 

This is my third life threatening experience I survived.

This all started at the end of August in 2013. I had a severe cold in May of that year that stayed with me the entire month and into June. It almost made us cancel our trip to Washington, DC, with my cousin Molly, but I started feeling better several days before and was recovered. So I went on the trip and it was totally gone when we got to the hotel in DC. It turned out to be a pretty awesome trip.

However, the cold may have been what eventually triggered the health issues I suffered from between August and January. So in August of that year, I began falling asleep a lot more than usual during the day. I started dozing off randomly and sometimes when I was eating, which was dangerous. It went from occasionally to every day and concerned my health care workers. It got to where I was asleep most of the day and barely went on my computer. I was even going to the movies and falling asleep there. My mom and I were in constant contact with my doctors in Boston, who were monitoring the situation. They weren’t too concerned about it and didn’t think they needed to see me right away but said if it worsens to bring me up to the hospital. Towards the end of January 2014, it got to be a major issue. One day I was so sick, and we went to the local ER. They didn’t do shit for me because they figured I was going to die. I was dehydrated and there was an IV bag of fluids right next to me, but after trying a few times and failing to get an IV into me, they just didn’t bother. They couldn’t get any blood out of me either, but they also didn’t try very hard. They took my temperature twice with two different thermometers and it was 92 degrees each time (which was way too low), but again, being the incompetent morons on duty that night, they claimed both thermometers were broken. I’m glad I went to the professionals, huh?!. The doctor, who was just as stupid, said I’d probably be fine and prescribed something that definitely wouldn’t have done shit for me and basically sent me home to die.

The next day my health was clearly in deterioration. I was falling asleep all day, and I was having problems swallowing anything. Which had actually been going on since November. I tried drinking tea, and it all ended up on my lap instead of down my esophagus. Definitely, something was wrong. In the afternoon, we contacted my pulmonary doctor in Boston and he said to get me up there as soon as possible. We packed up all my equipment in the van and raced up to Boston to the ER at Boston Children’s Hospital. I figured I probably wasn’t coming home that night. As soon as I arrived, they began running tests and doing EKGs and X-rays. They discovered I had a touch of pneumonia and I was suffering from malnutrition because of the Muscular Dystrophy and my inability to get enough nutrients. They admitted me to the ICU to be treated. I got to the room, and I had an IV put in and several vials of blood taken. It showed the how much better the care at the Boston hospitals is compared to Cape Cod Hospital. I finally got to sleep around 2 am. When I woke up, I was intubated...

In the morning, the doctor didn’t like how I looked and didn’t think I was getting enough oxygen, so he put me under anesthesia to be intubated. I apparently was fully conscious when I discussed it with him, but I have no memory of it because of the drugs they gave me. It took several people to do the intubation because I had an airway that was kinda tough to get the tube in. So when I woke up several hours later, I was a little surprised to see the tube and was like what the hell happened. I had the tube in for about 4 days and on the Thursday after everything happened they removed it. The pneumonia was gone, but I wasn’t out of the woods yet. The pneumonia, as well as all the other symptoms, was a sign that because of the malnutrition, my body was shutting down. If I went home, then it would happen again and again until I passed. I weighed around 78 lbs and I was still losing it. So I had a decision to make if I was going to save my life. 

On Friday morning, my pulmonary doctor, Dr. Graham, came to see me. He told me he recommended I get a Gastrointestinal tube and a Tracheostomy. Now I had been putting these two things off for over a decade because I wanted nothing invasive in my body. So my answer at first was I’d think about it. My mom was unhappy with me because I was still not wanting it, even though I desperately needed it. I asked the doctor what the G-Tube surgery entailed because I was terrified. Dr. Graham assured me it was a pretty simple 45 minutes surgery and I wouldn’t have to be cut open. So I said okay I’ll do the G-Tube but I don’t want the Trach right now. He was relieved I agreed to do that at least and scheduled the surgery for Monday. The surgery ended up being postponed until Thursday. I had the surgery around 2:30pm and everything went great. It ended up taking an hour and a half though because of issues with intubating me again. I woke up later that day and was alert, but I didn’t remember any of that because of the anesthesia. The first thing I remember after the surgery was it being Saturday. I was like, “how did the surgery go?” And my mom and aunt were like “you asked us twice already!” They were a little concerned, but were told by the doctor that it was normal. On Monday, they discharged me from Boston Children’s and we headed back home to the Cape. 

The first few days were a little rough because I was getting hit by waves of nausea. My stomach wasn’t used to that much going into it so fast. But eventually it subsided, and I was becoming comfortable with it. I was having a hard time sleeping at night though, and that sucked. We also discovered I had some skin breakdown on my tail bone two weeks after we got released. The visiting nurse suggested I stay off it by lying on my side in bed for a couple of days. I tried the pullout bed on the couch, but I probably would have been more comfortable on a slab of granite. So we moved my bed into the living room so I could at least watch TV. It took two weeks to fully heal, but I was getting up in the afternoon to use my computer. After that, I seemed to fall asleep and drool out my tea again. So we headed to my primary care doctor on Cape to figure out why that was happening again. While we were there, my Respiratory Therapist, Lauren, in Boston called and thought it had something to do with the Vent settings. Turns out she was absolutely right. We changed the settings slightly right there in the Dr’s. Office and I started feeling better immediately. I also started using a chin strap in bed to keep my mouth closed while I slept because it had a tendency to fall open and it was increasing my C02 again. So we fixed it. A few months later, my weight had increased to 125 lbs, and I felt so much healthier. I wish I did it years before. That Summer I started my Muscular Dystrophy shaving cream challenge and I’ve been doing it ever since. If I didn’t get the G-Tube, I wouldn’t have been here to start that. So I’m glad I chose life.