Jonathan B. Sanchez
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Jonathan’s Trach Story
Over the weekend of July 18th, 1998 (one month old), Mommy & Daddy noticed I started to wheeze when I was breathing. On Monday we saw Dr. Clifford, who was taking calls for Dr. Jack Seidel my regular doctor. She examined me and said I had Tracheamalacia. This is where the tissue around my esophagus has not fully developed yet and it was soft and made this sound. I should grow “into” it. Just to make sure, she sent us to an ENT Doctor. So on Tuesday, we saw Dr. Dansby and he confirmed Dr. Clifford’s diagnosis. Gradually for the next week and a half my Mommy said my breathing became slightly labored, but it was in complete rhythm with my wheezing so she thought it was all part of the Tracheamalasia. Until early the next week my Grandma and Aunts expressed their concern when they babysat me that my breathing scared them. Daddy had noticed my chest was really starting to cave in when I took each breath. So Mommy took me back to the doctor and this time we got to see Dr. Seidel. Dr. “Jack” told Mommy he did not like what he saw and did not know what was wrong. I was eating and sleeping fine, although my Daddy had noticed I seemed to be sleeping more during the day. Dr. Jack wanted us to now see a Pediatric ENT Specialist. On Friday, 7/31/98, we all head to another Doctors office. I was getting pretty good at this now.
Dr. Biavati looked down my nose with a scope while I screamed and had a fit on my Daddy’s lap. The Doctor said my esophagus tissue was just fine and I did not have Tracheamalacia like it sounded on the surface. In order to look further for the problem the Doctor told us to all go meet him at Children’s Hospital. They put me to sleep and went down my mouth to have a look. Dr. Biavati saw the problem right away. I had a subglottic hemangeoma in my windpipe. It was taking up about ¾ of my airway, which made it very hard for me to breathe! That night I had a Tracheostomy put in my throat. We were told I’ll have this for 2-4 years, until the growth goes away.
I stayed in ICU for 5 days. I was the healthiest baby in there! The doctors and nurses said I adapted extremely well to the trach and was doing great! All of them were so nice and good to me and my Mommy & Daddy. They taught my parents all about caring for me. I finally got to go to a room on the 6th floor and stayed there only 2 days. We all come home on Friday, August 7th, 1998.
- Update June, 2001
Jonathan is well recovered now and no longer has a trach. Over the last year I have heard from three or four other families via email that read about Jonathan on Aaron's Trach Page and had the same situation with their child. They wanted to know our story. I am way overdue to update this page so here you are. Even though it seems like so long ago since we lived our lives with a trached child, the stories of others still just tear me up and I slightly live through our earlier days all over again. Sit down a few minutes and I'll tell you our story.
At 7 wks. old we were in the Children's Medical Center @ Dallas having a trach put in his throat due to a subglottic hemangioma taking up 3/4 of his airway. It was the only answer at the time to save his life. I will never forget that full week in the hospital until we could go home. All the training and education about life with a child & a trach we received was so overwhelming. What would I do when I walked out that hospital door without the nurses? I knew I'd hold my baby and do the best I could do with my husband by my side and God watching over us all. So one week later we came home with machines, supplies, etc. and had an interesting life for the next 10 months.
Jonathan was so healthy in all other ways besides this trach so that was a big blessing. Joe & I and other family members (Grandparents and Aunts) all got comfortable suctioning Jonathan constantly throughout each day. We changed his trach 1-2 times a week. Of course with time each change got easier...but I still held my breath every time I did it. I think the thing I disliked the most was not that he had it, but all the maintenance of it. I was so tired every night of all the cleaning of supplies and getting his crib ready with mist. He had to sleep with oxygen mist going into his crib and sleep with an apnea monitor belt across his chest.
I guess the other difficult thing to adjust to was not to hear him cry or talk! But we got used to that too.
Joe & I did not want to try laser surgery. We heard too much could cause scar tissue; which can cause more problems later. We tried oral steroids for a 3-month period when he was 6 mos. old. This was expected to reduce the size of the hemangioma and possibly live without the trach. However, the steroids never affected the size of the hemangioma at all. That was quite disappointing!
So we decided to go with option #3 - surgery. The doctor said Jonathan's condition and placement of the hemangioma was a good case for surgery.
In March 1999 Jonathan had a very successful surgery that removed the hemangioma. He was 9 mos. old. But they didn't de-trach him just yet. His doctor wanted to make sure the growth wasn't going to start growing back right away and have the need to trach him again. On May 5th, 1999 Jonathan was successfully decannulated. He was almost 11 mos. old. We prayed all this would be over by the time he turned one. And it was. Jonathan graduated from Speech Therapy in Dec. 1999, just 7 months after decannulation. He did wonderful and so did his therapist!!!
Jonathan will turn 3 yrs. old in June 2001 and talks and plays just like anyone else. The trach did not phase his life at all. We did have to go back into surgery in Nov. 99 to close up his stoma, but it is a very tiny scar in the crease of his neck and hardly noticeable.
We still keep in touch with a couple people from his Trach Support Group here in Dallas. A support group was the best thing for us at the time. I urge people to see if you have anything like this in your area. We learned a lot from other parents and made good friends and helped each other through rough times. Aaron's Tracheostomy Page was also a fabulous resource for us to turn to time and time again.
God bless all of you having to read through this web page for whatever reason. I believe God has made you a Guardian Angel to your child for a reason maybe only he will ever know. Be strong!
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- You can e-mail my Mommy & Daddy at: jbs98@hotmail.com
