I awoke to the sun peeking through the broken blinds of my window that refused to close no matter how hard I pulled them. These were my favorite mornings—when my room was bright and peaceful. Plus, it was nice to see the sun after the previous days of rain. I sat there for a while enjoying the moment. My sister came in a short time later and sat on the floor beneath my window. With anticipation for the day to come, we quietly turned on music and talked and laughed while waiting for the rest of our family to wake up. That evening was the annual pool party, hosted by our friends for our churches’ youth group, that we marked as the official start of summer. With all our friends there, we would enjoy being together burning our homework from the previous school year, swimming in the pool, and making s’mores. It was definitely an event to look forward to! Addie and I decided to go on a run that morning—a habit we hoped to keep going throughout the summer to be ready for the next soccer season. Considering it was one of my first times running just to run instead of for a game, we decided to start with one mile. By the time we got back home, I was pretty proud of myself for being able to keep up with Addie and not have to stop along the way.
Getting ready for the party was fun. I always enjoyed doing my hair and painting my nails. It allowed me time to myself to think and relax. After deciding that I was good to go, I grabbed my bag of homework and met my family downstairs. My siblings and I took a few minutes to tidy up the main floor of the house—per our Dad’s instruction—then headed off to the fun.
Separating from my brother and sister, I found my friends by the pool. After they practically shoved me into the water, we had a fun time messing around. Once we were tired, we grabbed our homework and headed down to the bonfire. Addie was down there talking to friends so she joined us. We had competitions to see who could throw their paper ball the furthest or how many papers we could throw in at one time. Afterward, most of the girls headed over to the picnic table to make hotdogs and s'mores. Addie and I went a different way. Close to the picnic tables and bonfire, there were two swings tied to large trees with broad branches. One was a rope swing that had a seat that I thought resembled a small hammock. The other was a giant tire swing, with a tire that was used for tractors—easily suitable for four people. Addie and I headed for the rope swing and took turns pushing each other
around, seeing who could make the other person go higher or swing longer. Our friends finished eating and joined us, so switched over to the tire swing. Before climbing on, I debated on getting in because usually this tire left black marks on my bathing suit. After some consideration, I decided it would wash out and climbed in anyways. Two of my friends sat on my right and left while my sister sat across from me. We enjoyed our time messing around, joking, teasing each other, and laughing all the while. The host of the party came around with his phone and asked to take a picture.
When the branch snapped, I heard a crack. Confused by the sudden loud noise, I gazed up at the sky. Another loud crack rang through the air, louder than the first—that was the last thing I remember. The following several weeks were a blur in the hospital PICU (Pediatric Intensive Care Unit).
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I don't remember much about my first weeks in the hospital. We were told that with all the trauma the brain most likely just blocked out the experience. I was on the PICU for about three weeks. When I first woke up, my mom was there. She asked if I knew where I was. I didn’t. She told me there had been an accident and I was in the hospital. She told me I broke my arm. I felt my eyes go wide. I had never broken a bone before so I sort of freaked out. She didn't tell me any more about my injury at the time so I didn't fully understand what happened.
I've been told the first thing I asked for after I woke up was a cold rag on my forehead. One of the side effects of quadriplegia is that one cannot control their body temperature. In the first weeks I was SO hot. The nurses would bring in buckets of ice water. Those caring for me would get a rag wet and place it on my forehead. It was so cold the ice chunks stuck to the rag. My family took turns switching the rag because their fingers would go numb. I remember asking for it to be changed every minute or so.
The second thing I asked for was a drink of water. I had a breathing and suction tube in my mouth and a feeding tube up my nose. The doctors weren’t sure that I would be able to swallow on my own so I wasn’t allowed to drink water for about three weeks. I was so thirsty! Eventually, whenever someone asked me if I needed something, I would say water. After a while, they stopped asking. At first, they wet my mouth using green sponges that tasted like mint. They dunked the sponge in the water and dabbed my mouth. One time, one of the nurses said I could swish water in my mouth, as long as I did not swallow it, and allowed her to section it out. The second time I did it, I coughed after and was not allowed to drink again until they could reevaluate. The green sponges stopped too. I remember asking the nurses to use one of the mouth care kits because it would moisten my mouth and keep it from being so dry. They had a special gel that they put in my mouth to help. At the time, I thought the gel tasted good, but trying it again later, it was nasty.
I hated the tubes in my mouth and nose. I couldn't talk because of the trach cuff in my throat--no one could understand what I was trying to say. The speech pathologists brought in a gaze machine, which was an electronic keyboard that tracked my eye movement. It was somewhat relieving to communicate when it worked--the technology is still being developed. When I did not use the gaze machine, I communicated with a numbered chart, which significantly reduced what I could say. A specific item on the chart corresponded to a number of times I blinked my eyes. I could pick things like itch, thirsty, hungry, and uncomfortable, then we played the guessing game for specifics. It was not fun.
In my hospital room, they had a board with my name on it and some other information about me, including the date. I remember checking the date every couple minutes hoping for it to change.
When someone told me about the possibility of getting a trach that’s all I wanted. It felt like it took forever to prove it. I want the tubes out of my face so bad. When the day finally came that I scheduled for surgery I was so excited! After I came out of surgery, I remember asking for water immediately. My mom said not yet. I was devastated, but it was so nice to be able to communicate easier by mouthing words. I still could not talk because of the trach cuff in my throat but people could read my lips.
Every few hours, I had to use a IPV machine that would violently blow air in and out of my lungs to reduce liquid from settling. I dreaded this machine. They started using it shortly after the accident. In the beginning, I was not fully lucid and did not understand what was happening, so my mind would concoct a dream--I was always running for some reason through a warehouse. My guess is that the machine made me feel like I was hyperventilating, so my mind thought I was running.
After several days, I finally had a swallow test. I passed and was allowed to sip water! Of course, they started with only one ounce four times a day; that is about the size of the medicine cup. I looked forward to drinking a little more every day! Nearly begging for something so basic, I made a promise to myself to be grateful for all that I have. Unfortunately, with my mind off of water, it started to crave food. It was not long before I remember feeling jealous and angry watching others eat.
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After a follow-on swallow test a few days later, I was allowed to eat puréed food. The first thing that I had was mashed potatoes. I quickly learned that I could not taste much with the trach cuff in my throat; it was mostly just textures. Food just wasn’t as good as I remembered. This was sorely disappointing after waiting so long.
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More to come....
Gaze Machine
Post Trach
Gaze Machine
WHAT'S NEXT
Makayla desires to get a epidural stimulator, which may have the capacity to restore motor functions, including movement of my arms, hands, legs, and core. Being able to scratch her own head, feed herself, gain bladder control, assist with bed or wheel chair transfers, etc.--regaining any of these abilities would be lifechanging for her situation.
The stimulator is not covered by insurance, so family, friends, and the local community are fundraising to cover the costs. Please consider helping.
MAKAYLA'S STORY
