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When we left A.C.H. my wife, son and I were living
with my wife's parents until I could get the money up to get our own place.
Being as I was working, my wife and her mother took care of most of the doctor’s
appointments and there was a lot.
My son's first major ordeal was to have the g-tube
removed and a Bard Button put in.
Which this picture shows what the button looks
like before surgery
Like a piercing I had to increase the size of the
g-tube hole for the button by changing the tube size three times.
My son's first major surgery after we came home
was the distraction
surgery which was performed by Dr. Ruas, who I recommend to
anyone needing plastic surgery. Dr. Ruas was also the same doctor who did the
cleft palette surgery. The distraction surgery was performed when John was six
months old.
Just to let you know what kind of person my son
was, the pins that are screwed in the jaw bone are about three inches long. Six
weeks after the distraction unit was in place my son decided that he was done
with them and pulled the left side out of his jaw. The good news is that the
bone was already healed and it was time for the distraction unit to come off
any ways but what a scare.
After the distraction surgery came the cleft
surgery. Which went great now it was time to start weaning John off the trach
and feeding button!! While working with a speech and physical therapist we also
had to coordinate with the E.N.T doctor to get the trach tube removed, I chose
the Trach tube first thinking that after that was done and healed then all pain
in the head would be lessened and learning to eat by mouth would be easier. The
E.N.T. doctor wanted to scope the airway to check for blockage. While scoping
they removed some granulation, which was the hole trying to close. This
happened three times when they found scar tissue starting to grow right above
the trach tube hole.
In the first part of April 2002 my wife and
mother-in-law went to an E.N.T. appointment and asked the doctor to do another
scope to see how bad the blockage was, they were denied. On April 24 2002 I got
a phone call from my wife at work telling me that my son was dead! After
breaking the land speed record I made it home to find the EMT and fire
department at my house. My
son was dead!
My wife and I went to a lawyer who said he thought
we had a case and took our information. A while later we received in the mail a
letter stating "after further review we cannot accept your case". So we didn't
have to relive that day my wife and I decided to let the matter drop and live
our lives with the knowledge that our son was loved and will not be forgotten
Jonathan Lawrence Fellows
July 9 2000-April 24 2002