Medical Updates (archive 2001) - PAGE 1
Kelli's Page
NOVEMBER 2001
We spent the week November 4, 2001 in St. Louis for Kelli’s two-year post op check up. Yes, two
years! Can you believe it! Her evaluation went beautifully. She came through all of her testing like a
champ. This set of testing included physical therapy and developmental evaluations on the first day.
The second day was the long day, with a CT scan, X-ray, VQ scan, ultrasound and PFTs, all under a
general anesthetic. The third day was the bronchoscopy.
Everyone was very pleased to see Kelli and she performed, as expected. Kelligar is now 27 months and
in the physical and developmental evaluations rated in the 30- to 36-month area. This is the first time
she has been ahead of the curve! There was zero rejection and we thought she was getting away free of
any infections. However, almost a week later (curious) they called to tell us that her culture was growing
both alpha strep and strep pneumonia. It is very odd that it would take a week for cultures to grow to a
count of over a 100,000 (a count that high has historically shown an infection brewing in just 24 hours)
– which requires treatment with antibiotics. Her doctor felt they had mistakenly sent the results for
someone else (since Kelli had no physical presentation of any infections and because the counts were so
high), but was unable to verify this fact since the slides had already been destroyed. So, better safe than
sorry, she was put on some antibiotics for ten days. No big deal. All of her blood work indicated that
her immunization levels, etc. were right where they should be.
We were very complimented when we heard that one doctor asked Kelli’s doctor if they had done
anything to this child; that she looked and acted like a perfectly normal two-year old (one without a
transplant!). That’s the best thing anyone could have said to us.
Overall, they felt she looked so good that they would have scooted us to annual visits, had it not been for
the lump on her right breast (discussed below). So we will return in June of next year.
It was a very busy and exciting summer for us. Kelli had her g-tube (button) removed in August, and
although it is a very slow process, it appears that it is healing on its own (meaning she won’t require
surgery to close it for her). We went to Sacramento, on our first family vacation, to visits our good
friends. Following that trip, Kelli experienced an ear infection in both ears – normal kid stuff. Tristan
started soccer. As mentioned previously, Kelli developed a lump (about the size of a dime) on the right
breast about six months after we originally came home from St. Louis. It was small and hard but pliable
so it was thought to be a side effect of her immunosuppression. Then seven months ago, the lump went
away completely and then reappeared, but this time larger (size of a half-dollar) and different in texture.
In March she had some blood work done, x-ray of her left hand (to measure bone growth) and an
ultrasound of her uterus and ovaries. Although they found her hormone level to be a little higher than
normal, all the other tests indicated there was no surge in hormones or pre-adolescent development. The
lump changed yet again and another set of labs was taken, but again nothing resulted.
We spent the week November 4, 2001 in St. Louis for Kelli’s two-year post op check up. Yes, two
years! Can you believe it! Her evaluation went beautifully. She came through all of her testing like a
champ. This set of testing included physical therapy and developmental evaluations on the first day.
The second day was the long day, with a CT scan, X-ray, VQ scan, ultrasound and PFTs, all under a
general anesthetic. The third day was the bronchoscopy.
Everyone was very pleased to see Kelli and she performed, as expected. Kelligar is now 27 months and
in the physical and developmental evaluations rated in the 30- to 36-month area. This is the first time
she has been ahead of the curve! There was zero rejection and we thought she was getting away free of
any infections. However, almost a week later (curious) they called to tell us that her culture was growing
both alpha strep and strep pneumonia. It is very odd that it would take a week for cultures to grow to a
count of over a 100,000 (a count that high has historically shown an infection brewing in just 24 hours)
– which requires treatment with antibiotics. Her doctor felt they had mistakenly sent the results for
someone else (since Kelli had no physical presentation of any infections and because the counts were so
high), but was unable to verify this fact since the slides had already been destroyed. So, better safe than
sorry, she was put on some antibiotics for ten days. No big deal. All of her blood work indicated that
her immunization levels, etc. were right where they should be.
We were very complimented when we heard that one doctor asked Kelli’s doctor if they had done
anything to this child; that she looked and acted like a perfectly normal two-year old (one without a
transplant!). That’s the best thing anyone could have said to us.
Overall, they felt she looked so good that they would have scooted us to annual visits, had it not been for
the lump on her right breast (discussed below). So we will return in June of next year.
It was a very busy and exciting summer for us. Kelli had her g-tube (button) removed in August, and
although it is a very slow process, it appears that it is healing on its own (meaning she won’t require
surgery to close it for her). We went to Sacramento, on our first family vacation, to visits our good
friends. Following that trip, Kelli experienced an ear infection in both ears – normal kid stuff. Tristan
started soccer. As mentioned previously, Kelli developed a lump (about the size of a dime) on the right
breast about six months after we originally came home from St. Louis. It was small and hard but pliable
so it was thought to be a side effect of her immunosuppression. Then seven months ago, the lump went
away completely and then reappeared, but this time larger (size of a half-dollar) and different in texture.
In March she had some blood work done, x-ray of her left hand (to measure bone growth) and an
ultrasound of her uterus and ovaries. Although they found her hormone level to be a little higher than
normal, all the other tests indicated there was no surge in hormones or pre-adolescent development. The
lump changed yet again and another set of labs was taken, but again nothing resulted.
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