Saturday, March 3, 2007

Another Day Goes By

I met a couple of parents that are writing on these bogs and I thought, why not? I might as well too. Who knows, I could reach out to someone somewhere.....or something.
Where to start????
I guess I could give a quick rundown of what has been going on in my daughter's life in the past year.
Katlyn Lee DeMerchant was born Feb. 5, 2006 at 2:30 p.m., and everything was just so perfect. I thought we are going to be so happy having this little girls in our lives. Little did I know that that was so true in so many ways.
Katlyn was born a little mucousey. I never really thought anything of it cause a lot of babies are mucousey, and this should pass within a couple of weeks. Well, it didn't. And two months later was a nightmare.
A baby at two months isn't very big. I can remember being horrified that my little bundle of joy could be so hot. I knew something was very wrong. Babies this young should not get sick. We brought her to emergency. She had a fever of 104 degrees. They detected e-coli in her system so started to treat her for that. Two weeks later we found out the e-coli was detected in her throat.
Besides what brought us here, that was the sickest she ever got. I had her in emergency a couple times a weeks and to the doctors at least once. I knew something was wrong. I was so scared that I might wake up and find my girl gone. It just seemed to me that she was having a hard time breathing.
Believe me when I say I tried my best to get to the bottom of what was wrong with my daughter, but ignorance stood in my way. There is just so much more education and awareness needed for this condition. The doctor's that we had seen just didn't know about this.
My girl was diagnosed when she was 7 months old. She was extremely ill. She had PCP Pneumonia. Those days were so scary. She was on oxygen for a month. I can still ear her panting for air.
We could have lost our little girl.

Katlyn looks just like your average 1-year-old, but on the inside something is very wrong. She has been at the IWK, in Halifax, N.S., for 6 months. Each day is a constant risk for my daughter. She is isolated to her room. She can't leave. She can't touch the floor, and everything has to be cleaned continuously. Basically, she is in a bubble and her room is her bubble.

Right now we have no idea what's going to happen. Bone marrow transplant is an option, but only as a last resort. Gene therapy is the other. It's very exciting and promising for Katlyn, but her neutrophils have been standing in her way. Her doctor here contacted the doctor in Italy to see if they might take her. He said he would if she could maintain a level over 1000 for one month. Well she has. And still we wait with no idea. After waiting for a month Katlyn went down to 600, then 800. I really don't know why. Maybe she was fighting something or other. We can only test for the known.
The great news is Katlyn's numbers are again really very good. 1200. And so we wait. We wait to see what will happen tomorrow, next week, month and for the rest of lives.