Kaitlyn's Story
written by mom Kelly
My daughter was a normal 10 year old until her
accident on July 26th, 2006. She was out riding her bicycle with some
friends and flipped over the handle bars on her bike. My husband and I were
at home and it was getting really late, so I went out to call her in and
found her wandering around without her bike. She came inside and had no idea
where she was and didn’t remember what happened. In the meantime the parents
of her friends called and told me she had fallen off her bike and was
knocked out.
We immediately called 911 and they took her to the hospital. She had a huge
bump on the back of her head and was complaining her head really hurt. They
did a CAT Scan and told us she had a few bleeds in her brain, one in the
right temporal lobe which controls your short term memory.
They transferred her to the PICU at the University of Chicago Comer’s
Children’s Hospital. We spent 5 days in the Intensive Care Unit and another
week on the floor. Kaitlyn has suffered many set backs from this accident...
seizures, headaches and vision problems. But on a more positive note, this
accident helped us uncover another problem. The intracranial pressure in
Kaitlyn’s head has been increased since her accident and they have been
removing the excess fluid to help stabilize her.
After 4 LP’s (lumbar punctures) and a pressure of over 60, they diagnosed
her with Pseudotumor Cerebri. The normal pressure should be 0 or less.
Pseudotumor is an increase in pressure around the brain. We have been
through several tests and a lot of different solutions to find something
that will work for my daughter. We have exhausted all the drugs that could
possibly help her, with no real relief. They tell it is time to discuss
surgery, not something we wanted to think about.
It’s been over a year since we started this journey and I think its about
time we head down the road to recovery. First, they want to remove her
tonsils. She went for a sleep study and the results showed she does not get
enough deep sleep. What does this have to do with her condition? Well, you
body produces CSF (cerebrospinal fluid) constantly
when you are awake, but does not produce any when you are in a deep sleep.
So that means that Kaitlyn is producing extra CSF, which is causing her
increase in pressure around her brain. If they take her tonsils out, maybe
she will get more deep sleep and produce less CSF, making her Pseudotumor a
little better. Doctors tell me not to hold my breath, it is a shot in the
dark and will probably not help much. We need to try all options so that is
next.
We had our first VP shunt placed on January 11, 2008. It was not successful
and Kaitlyn suffered many setbacks. She developed a bleed between her dura
and her spinal cord and chemical meningitis. We had a second shunt placed on
January 28, 2008. After almost 6 weeks in the hospital, we finally got to
come home. Unfortunately, it did not last long and she had a shunt revision
on March 17, 2008. We still do not have a working shunt, but we are hoping
that someday there is a cure. Taking things one day at a time.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.
Siblings:
brother Alex, age 10
brother Brayden, age 3
Child's Interests:
Kaitlyn loves to make things, scrapbook, take photos, animals (she wants to
be a zoologist), especially dolphins. Her favorite color is blue and she
collects Webkinz and teddy bears.
Sibling's Interests:
Alex likes sports and his favorite is baseball especially the NY Yankees. He
likes to draw and collect Pokemon cards.
Brayden likes cars and Thomas trains. He also loves to look at books and be
read to.
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