In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Wednesday, April 23, 2014

Shane's Story - Chapter 13

1999 started out great... Shane turned 6 and the members of CHERUBS threw him a surprise birthday party (surprise to me too!) at the first ever charity event.  
But by summer things started to take a very bad turn.
In July he started coughing so we took him to his pediatrician, who was very afraid of Shane's medical history but we live in the sticks and don't have many options for local doctors. After demanding an x-ray we saw the x-ray film- the entire left side of his chest was whited out as if someone had taken paint to the x-ray. We left the pediatrician's office and went straight to Shane's surgeon. We all thought it was pneumonia and he was admitted to the hospital and put on antibiotics. When it didn't clear up and he got worse, we guessed he had reherniated (the x-rays were so bad you couldn't see any organs at all on that side) so he went into surgery. He had reherniated- for the 6th time. Shane never had much diaphragm to work with and the empty space between his lung and his diaphragm never filled, so it created a vacuum and basically it "sucked" the Gore-tex up. Apparently he had been reherniated for a while and the Gore-tex was wrapped up like a ball and had torn a tiny hole in his stomach and in his lung, allowing formula and stomach bile to enter his lung. This is called a gastroplueral fistula and is so rare that there are only a handful of cases in the last 30 years. We only found a few research articles on it and Shane's surgeon had never seen anything like it before. She repaired the hernia and sutured up the holes and we thought we'd be going home in a few days, but the pneumonia got worse. The hole in his stomach was so high up and in such an awkward place that the suture didn't hold. Shane was also so malnutritioned because of a lack of calories with the formula he was on (he never did decide that eating by mouth wasn't a bad thing) that his body couldn't heal properly. We decided to pump him with extra calories through his intestines and keep his stomach drained so that his lungs would clear and he would heal. Through it all he was a happy little trooper. He played in the hospital, rode around in a wagon, the nurses were tripping over toys (matchbox cars make a very cool sound when they hit tiled floors), and we had to have a room with a VCR so he could watch Sesame Street. We spent almost 2 months in the hospital and when we came home he still was fed through his intestines, his stomach was still being drained, he was on antibiotics, and he had to sit up all the time, even while sleeping. We came home the beginning of September, deciding that if the holes didn't close by the first of November he would have had enough nutrition to have surgery again.

On September 9th we went for our weekly visit to see Shane's surgeon. He was coughing a little, but we thought that was a good thing because he was clearing his lungs finally. Everything looked good and we drove the hour trip back home. All the way home, the kid who always looked out the car window and smiled at all the transfer trucks wouldn't take his eyes off me. He stared at me for an entire hour and for an entire hour I worried and wondered about why he was doing that. The next day he wanted me to sit beside him and play with him all day long. It was the first day in months that I didn't work (even while in the hospital) and just sat and played with him and held him. He was never a real clingy child and I wondered then if we should take him back to the hospital, but I didn't know what to tell the doctors, "He's clingy". I stayed up with him all night that night and finally went to bed when Jeremy got home from work at 11am that Saturday morning. 

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