Jacksonville, FL
June 2003 - July 2003 - July 2011 - August 2011
Kellisa struggled with several issues that led to the placement of
her first G-tube. Kellisa was having trouble drinking; liquids would just drool
out of her mouth. Kellisa would get tired of chewing and couldn't process chewy
or tough foods, so it was hard to get her to eat enough calories. Even with a
steady diet of peanut butter cups and chocolate pudding (for liquid intake),
Kellisa was failing to grow and gain weight, a combination commonly called-
failure to thrive. She was 4 years old and stuck at 19 pounds.
It was a tough decision to agree to the G-tube surgery because it
seemed so permanent and also admitting a failure. At the end of the day, we
knew it was the right thing to do and it was time- time for Kellisa to start
thriving.
Kellisa had the G-tube placed in June 2003 without any
complications. It took a couple of days to get use to the new process, but it
definitely made things easier, especially making sure Kellisa received her many
prescriptions. The most important are her seizure medications and we would now
know that they were completely dispensed because a G-tube connects directly to
the inside of the stomach.
Summer school started for Kellisa a couple of weeks after the
surgery. Because it was a shorter school day, Kellisa wouldn’t need a G-tube
feeding at school. She would get one right before and one following her day at
school..
One day, a school nurse took it upon herself to give Kellisa some
water by G-tube. Unfortunately, the nurse was only familiar with G-tubes in the
elderly and not children. We’ve been told that you need to pull on the G-tube
to make sure it’s still attached when dealing with the elderly. With children,
this is not necessary or even recommended. We would find this out the hard way.
The nurse pulled on Kellisa’s G-tube and pulled it from her stomach. The inside
part of the G-tube now emptied into her stomach cavity.
The nurse did not tell us and even denied “feeding” Kellisa. We
would take Kellisa to the doctor and they tried to save the G-tube, but weren’t
successful. Less than a month after Kellisa’s 11th surgery, she
needed her 12th to replace the G-tube and connect it to her stomach.
Kellisa would suffer from granulation tissue after the second
surgery. According to the free online Medical Dictionary, granulation tissue is
defined as:
“The newly formed vascular tissue normally produced
in healing of wounds of soft tissue, ultimately forming the cicatrix”.
Here’s my definition: “tissue, sometimes blooding and/or oozing,
growing out of Kellisa’s stomach around the plastic G-tube, causing irritation,
itching and the need to stain treat every article of clothing that comes in
contact with it”. This definition is based on years of dealing with granulation
tissue.
The treatment is to have the granulation tissue burned off. We
were going to the doctor on a weekly basis to have this procedure done. After
several months, the doctor sent us home with the necessary supply of silver
nitrate to burn the tissue ourselves. After continuing the treatment for several
months at home, the granulation tissue finally stopped growing for good.
______________________________________________________________
Kellisa went through a growth spurt in early 2011 and her G-tube
was being pushed in a downward position by her growing ribs. Basically, she was
outgrowing her G-tube placement from 2003 and it needed to be relocated to a
lower position. Kellisa’s third G-tube surgery (21st overall) was
performed in July 2011 without complications.
About a week after the surgery, the G-tube started to look like it
was being sucked into Kellisa’s body. We went to the doctor and they reworked
the placement a little and even made a custom support to fit between the outer
button and Kellisa’s skin. A few weeks of trying to “nurse” the tube into a
better position failed and a second surgery was performed in August 2011.
The same doctor has performed all four of Kellisa’s G-tube
surgeries. In fact, her doctor helped pioneer the type of G-tube Kellisa uses
and has probably performed more of these surgeries than anyone else. According
to the doctor, it’s a one in a million to have to perform back to back G-tube
surgeries. The surprised doctor couldn’t place odds of the double surgery happening
twice to one person.
Of course, we are still treating granulation tissue more than two
years after her last G-tube surgery. Again, 1 in a million has granulation
tissue that lasts “years”.
I was never surprised by the odds because Kellisa is always the 1
in a million! I can’t wait for Kellisa to be old enough to buy lottery tickets.
G-tube with granulation tissue on September 1, 2013. Scar from the first G-tube site can be seen just above the new placement.
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