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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