Devin Arnold
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Hi! My name is Devin. I was born 8-12-02. I was diagnosed with a genetic disease called SMA (Spinal Muscular Atrophy) Type 1 when I was just a little over 3 months old.
SMA is a progressive muscle weakening disease. I am not able to swallow, eat orally, crawl, walk, or even hold my head up. It was a complete shock to my whole family. No one in my family had ever heard of this.
After my diagnosis my mommy and daddy had a lot to learn. I was going to need a lot of special care. My mommy had to learn how to place my NG tube for me to eat and how to suction because I
wasn't able to clear my own secretions. I was sent home on a liter of oxygen. I did really well for a long time. I was just as happy as ever. I loved watching my cartoons all day on TV (I still do).
On 1-7-03 I had a really rough day, mommy didn't know what was going on with me. I had a really bad crash so my mommy had to call 911. I went to the emergency room fine, I was acting ok, but the paramedics
wouldn't let my mommy and daddy ride in the ambulance with me. They had to follow behind in the car.
When Mommy got there she knew something bad had happened when the nurses
didn't automatically come out to take her to me like they usually did. (We went through this a lot). Finally a nurse came to get my family. She looked really sad and worried so mommy knew it
wasn't a good thing.
When mommy came to my room a doctor met her there and told her that I had quit breathing. He said that he got me back but if I did it again did she want them to intubate me. My mommy yelled,
"Yes, of course I do". Next thing she knew I had that awful tube down my throat.
I stayed two days in my local hospital. Long enough for them to diagnose my problem as aspiration pneumonia. I had refluxed my food into my lungs. The two days later I was sent to East Tennessee
Children's Hospital. At ETCH I did really well. I was allowed to wake up some and watch TV. I just smiled and played. I was just happy to be able to breath.
I ended up getting my G-tube while I was there and a Nissen wrap for my reflux. I have been having such a hard time that my family decided it was time for me to get my tracheotomy. I got my tracheotomy 2-5-03. My mommy thought that it was one of the best things that could have happened to me. 15 min out of recovery I smiled at her. She knew I would be fine. I had to stay in the hospital a while. I
didn't get to go home until March 10th 03.
When I got home I had a new big room with all of my equipment ready for me. I got to meet my new nurses who were going to be helping to take care of me and I finally got to be with my whole family again.
Since my tracheotomy I have been doing GREAT. I am just a happy little boy who loves life. I love my family and my family LOVES me. I am the center of attention and spoiled ROTTEN! To learn more about SMA Please go to
www.FSMA.org.
Here is a list of the equipment that I use:
- Shiley 4.5 NEO Trach
- Puritan-Bennett Achieva PS Vent
- Emerson Cough Assist In/Exsuffilator
- Datex-Ohmeda 3900 Pulse-ox
- Mic-key G-tube
- Kangaroo PET feeding pump
- The Vest Percussion System (When I am sick)
