Eli Dearwester
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Hi my name is Eli and this is how I got my trach. When I was born a healthy 8 pounder, my mom and dad took me home to a loving family of 2 big sisters and 1 big brother. When we go home mommy noticed I had a sunken chest and called our trusted ped. He told mom not to worry most kids have this and he would see us at our 2 week appointment. Well every time mommy put me down I would cry and so she thought maybe I wasn't snuggled enough so she put me in a car seat to sleep. Well, after numerous trip to the doctor and ER, my mom made me get admitted to our local hospital. They didn't even want to keep me over night after apnea episodes at home. They transferred me to Dayton Hospital and I found out I had laryngomalacia and tracheomalacia, along with reflex. But because I have a large tongue and small chin, mommy didn't know I was reflexing. Well, we tried to go without having a trach and I had a tongue lip adhesion. They fastened my tongue to my chin and sutured with a button. We tried that and it was horrible. I didn't like it and it didn't help me at all. The doctors wanted to do a c-pap and we did for a few days and mom said she wanted to have a trach put in so, that's what they did. I think mom wanted me to live a normal life, not have a mask on my face all the time. The doctors put my trach in and then mommy noticed I could talk around it. She told doctor Neilsen and he realized my trach wasn't in at all. Mom thought I had a funny color to me! They rushed me into surgery and I came back out a few minuets later. Then my trach came out on it's own , 2 more times. They finally had to super glue a 3.5 Shiley the top to a et tube and put me in a medical induced coma for 4 long days. My mom felt like the world was against them. She was frightened I wouldn't make it. But I'm a fighter, if I could breathe without the trach I can with one!! Well, I woke up and I still didn't feel good, I kept arching and turning blue, my mom tried to tell them I was in pain. They thought mom was nuts and in the hospital too long. One of the doctors told a resident, (MOM heard him). I'll fix his airway, not his brain. They thought it was my temperament. Mommy took me to doctor Cotton and hoped he would listen. Well a resident put me in a 4.0 Shiley and off we were. We went home and the next day I got to ride in a helicopter back to Dayton. I had pneumonia from reflex. I heard mommy say she was trying to tell the GI doc's that she was suctioning cereal from my trach. They weren't convinced so, I got sick instead. Well, our new GI doctor wanted us to have a nissin fundo done. We had to go to Riley Indiana for that. I had stomach surgery and was very sore and I was still arching and turning blue. So mom got a second (third?) opinion from doctor Tsngaros in Riley . He was amazed that I was tolerating my trach at all. My stem on my trach was so close to my bronchi it hurt me and I arched. So mommy called doctor cotton and told him he needs to look at him again. Boy that was a emotional mess mom was so mad at them for ignoring everything. Finally, doctor Cotton himself took care of us after taking care of a few residents. They gave a custom made trach that, it fit much better and wasn't as long. Then I finally got to go home after 3 long months of not seeing my sisters and brother. It's been almost 2 years and I'm going to turn 2 in December. My family is great, I have so much fun. I chase my pups around (as long as I have my nose on). I can talk now without the pm valve (I don't like it). My mom and dad are waiting patiently for my chin and tongue to grow. Hey me too!! I can't wait. Mom thinks Cynthia and Aaron are the best for coming up with this page. She says she doesn't feel so alone now. Feel free to email us so we can make new trach friends.
Update December 2001 - Hello everyone, I just thought I would send a few updated pictures of Eli. He turns two tomorrow, and we are so lucky he is developing wonderfully. He goes in for a tonsillectomy and adenoid removal on the 2nd of January. Hopefully this will just provide more room for his airway. He is a wonderful little boy, our only issues with Eli is he will not share the TV!! It's barney and blues clues all the time. He is doing signing and he actually, talks all the time without a passy-muir valve. I remember a time when we couldn't wait until he spoke. Now he will not stop talking. We love it though. I just want to say to all the family's of kids with medical problems, god is with all of us, even through the bad times. And we all have each other to lean on also. Thankfully, we found each other through this page.
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Update April 2003 - Well everyone, I just wanted to share the joy our family experienced this past Friday. On April fourth, Eli was decannulated. It was one of the most wonderful things that has happened to our family in along time. I got to take out the trach. I told them, hey I'm the one who took care of it for three years I want to be the one to get rid of it... He did great, he kept saying ,it's all gone. Thanks to everyone on the trach board who have given me support over the last three years. I'm so glad to have made so many wonderful friends. And of course, thanks so much to Cindy for having this board for all the families in the first place.
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