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Heather Trotter
06-01-2002, 12:10 AM
The last few times I have been to the ENT clinic have really depressed me. I have to drive an hour and half to get to Morgan's appointments just for them to tell me nothing. They haven't checked her the last couple of times. This past time I drove and hour and half waited in the waiting room another hour for them to tell me that they were just going to follow her. That she was no were near being decannulated. My worry is that she never will be. http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/sad.gif

When Morgan got trached when she was just four months old. They told me she had severe tracheamalacia 9/10 collapsing and I had already known about the reflux and the laryngomalacia since she was a month old along with the tracheamalacia which I was told at a month old wasn't that bad even though she had a couple episodes were she stopped breathing and had to be vented. They would blame it on something else. Virus, reflux ect...........

Anyway, surgery was a couple hrs after the broncoscopy due to a severe apnea spell (we almost lost her). They told me she would have the trach at least two years. Then they told me two to four years and know they don't know. They just tell me they think she will grow out of it, it will just take some time. She hasn't shown any improvement since she was trached and it makes me worried. I try to keep my hopes up but, sometimes I feel like she may never grow out of it. Then I feel depressed because it shouldn't matter as long as she has a good life and is happy.

I was just wondering if anyone else out there has the same situation were there has been no improvements and they are in the dark as to what is going on with there childs future? Has there been anyone out there who had a child who never got better with a trach due to tracheamalacia and will wear a trach for life? http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/sad.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/sad.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/confused.gif http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/sad.gif

Heather Trotter
06-01-2002, 12:12 AM
just wanted to add some info:

Morgan is 19 Months old and has distal tracheamalacia. She collapses mid drift to the carina.

drew's mom
06-01-2002, 08:43 PM
Hi, Heather! My son has had more problems since he was trached. BUT he sleeps better !!!!! He couldn't sleep before because airway would close due to low muscle tone. Have you ever tried requesting her medical records? Thats how I found out my son had cerebral palsy and cortical blindness.
I found this out before the doctors even told me anything.
I read all reports for each visit with all of his specialist. And the neurologist said he didn't want to tell me because he doesn't like to diagnose children under 1 year and a half. Requesting her records might help! This helped me because I found answers pertaining to my sons health. Our children are little miracles! We never know what they are capable of doing.
Little Morgan might need a little more time. Next month she could be stonger and be decannulated. Stay strong we all made it this far!

Heather Trotter
06-04-2002, 09:33 PM
just wanted to thank everyone who wrote to me and told me about there situation. It's nice to know that this is not uncommon and I am not just imaging things (about the doctors run arounds). Thank you everyone.

Heather Trotter
Morgan's Mom http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/biggrin.gif