Curt Lyman
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Curt was born Aug 22, 1985 with type C TEF along with PDA, only left lung, severe
tracheomalacia, vascular rings, hydrocephalus, and left arm-thumb deformed.
He was trached at 2 months old with a custom made Shiley. His TEF was repaired at 1 year old (3rd surgery for his TEF) by stretching and pulling up part of his stomach.
He had 10 major surgeries his 1st year. He spent 16 months in ICU vent dependent.
Finally he went home at 22 months old. He was 24-hour oxygen dependent until 3 years old.
Until 1997 he only had a few minor hospital stays - his surgeons words were remarkable considering all of his multiple problems.
Mom and Dad say just the daily routine of dealing with insurance companies, nursing agencies, school, working,
daughter, and Curt’s check-ups. His trach size was downsized to a size 1 ped, but still made custom extra long.
Jan 1997: The next nightmare. Curt would be OK during the day but at night he was drowning in his salvia 1/2 hour after laying the least reclined.
So back to his surgeon which testing revealed the problem, a stricture in his esophagus.
We tried dilation but as a nurse said some kids just don’t stay open.
March 1997: Curt was admitted to the hospital with aspiration pneumonia.
WOW, please don’t blow our only lung. Tried another dilation and medications, but Curt was still the same.
He was not getting any sleep. So his surgeons words were "will have to replace the bloody
thing" (his esophagus). It seemed like we were so far back down the hill and on the wild roller coaster ride again.
July 1997: Curt had his colon interposition surgery. The surgery took 10 1/2 hours.
For recovery he was in ICU on the respirator, 2 chest tubes, and lots of other tubes.
He was back up to a size 6 trach tube. Looking back at baby pictures it seemed almost identical to those long days.
After 3 weeks Curt went home.
Aug 97 - April: Curt was not himself, having constant breathing problems and not having any energy.
The doctors tried a cuffed trach tube, J tube and feedings only during the day, and medications.
Curt was having reflux issues. He was in a viscous circle of in and out of the hospital, ER trips and antibiotics.
May 98: Enough was enough. Curt’s g-tube site was leaking stool, he was not tolerating any feeds and respiratory he needed more oxygen.
His surgeon felt that his colon interposition had twisted and folded. Curt had a 6 hour surgery that disconnected his colon interposition from his stomach.
After surgery he was in ICU and on the vent again. He got to go home after 10 days.
June 98 - Feb 2000: Curt was for the most part doing great. He was sleeping well and his energy level was good.
Then at the end of Feb he was diagnosed with RSV and also it was determined that he had outgrown the length of his trach tube.
April 2000: Curt got his new trach tube and seems to be doing better.
