Welcome Friends!
Kaylee P.
California
Birth Date - June 18, 2003
Main Diagnosis - Mitochondrial Disease Complex III & IV
Quilt Deadline: 4/1/2013
THEME: Hope (words or phrases) with pink if possible. Kylee likes dolls and flowers and bugs and any animals, but all should have the word HOPE or a phrase about hope and pink in each square.......... dolls, flowers, bugs and animals are optional.
Biography
Kylee was born June 18 2003. From the moment she was born we knew
something was wrong. She was born with a Ptosis( droopy eye lid)and severe GERD.
At 3 weeks old she was diagnosed with having seizures. Thankfully after having
30 of them they disappeared. Kylee continued to have severe vomiting issues and
was FTT. Kylee was also
developmental delayed. She had many diagnoses including CP. Kylee
had her first of many surgeries at the age of 1. She had ear tubes put in. At
age of 23 months she had a Toupet Fundo and G tube placement.
In 08 it was brought to my attention to look into Mitochondrial disease. Kylee
had a MtDNA..which came out normal. Next step was to do a muscle biopsy. Kylees
Electron trans Chain(I believe that's what's it called) were abnormal. This
showed she had defeats in complex III and IV. This is the day our lives changed
forever... Kylee had Mitochondrial Disease.
To this day Kylee has had 20 surgeries and countless medical procedures. The
biggest surgeries are FUNDO, G Tube placement, Ptosis, Pylorplasty, muscle
biopsy, Roux En y, Port A Cath, MACE, Ileostomy, and Ileostomy revision. Kylee
has a G Tube for medication and venting. Separate J tube for nutrition. Port for
IV fluids 7 nights a week, and an Ostomy.
The last 2 years Kylee has been inpatient every 4-8 weeks for bowel clean outs.
Just this year Kylee has been inpatient every month for 3-4 weeks stay because
her colon just didn't work. In February we tried the MACE which ended up in
failure. Kylee was still ending up inpatient. Kylee had a barium enema which
showed she had a Megacolon. The decision was made to go ahead and do the
ileostomy. She has had a few complications but overall glad we did it. July
11-12 Kylee had a Manometry testing done. Thankfully her stomach and small bowel
are working ok( not great, but working). Unfortunately her colon does not. She
has nerves but the signals don't work. Really the doctors have no hope that her
colon will ever work..since 2 years ago she had the same test and was normal,
but right now the plan is..repeat test in 1 year. if colon is better we can
reconnect again. If still the same we will do a Colectomy.
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