Thursday, May 29, 2008


It's been awhile since I have updated Katlyn's blog, but there has been reason. Last week we had a visit at NIH and we were very happy to see that Katlyn's neautrophils were climbing and staying within normal range. She reached an ultimate high of 3600. We were very happy about this. Katlyn received her IVIG last Tuesday and everything went well with that. On Wednesday Katlyn was brought into the OR where she was scheduled to undergo four biopsies on those spots I have mentioned. Everything with the surgery went very well. A couple of hours after the surgery we were notified that Katlyn's neautrophils would probably drop because she was given a type of medication that Katlyn has been shown to be sensitive to in the past. It is standard practice for a patient to be given something during surgery to reduce the chances of infection. Katlyn apparently has been given this medication in the past and it has caused her neautrophils to drop possibly. You see, Katlyn was having a problem with her neautrophils anyway, so they didn't know if it was an effect of the medication.
So we checked Katlyn on Thursdasy morning and she had indeed dropped down to 600. By that evening she had gone up to 800 and so we came home on Friday morning. You see, 500 is the safe mark and they would have kept Katyln is she dropped below that. So we checked her again on Saturday and she climbed back up to 1400. The newest count was yesterday and she had dropped. We thought the effects of the medication were over, but a count of 470 says otherwise. So now we have to keep Katlyn even safer. We can't go outside if it's windly, or around freshly mowed grass. We have to watch her very closely and take extra care and caution right now. I will be taking her again for bloodwork on Monday and hopefully things are looking better.
On the plus side, Katlyn is feeling great. A couple of her steri-strips had fallen off one of her spots, but while I was at the hospital yesterday they fixed it. The nurse also took a look at all of the other spots and said they looked good.
Now here's the very exciting part. Katlyn toxic matobolite level was down to 0.8%. That is what kills off her cells and why she has no immune system. Because Katlyn has a defective ADA gene, her body doesn't usually filter those toxins. Obviously, Katlyn is having ADA activity because thos toxins are being moved out. This is great. This shows her gene therapy is working and it's only a matter of time and her cells will come up stay up. I beleive that someday soon, Katlyn will be healthy.
Katlyn is happy and well. The 26th marked one year since her transplant, and I just can't belive it's been a year. In some senses it's been a long time, in some other ways it passed very quickly.