Friday, October 17, 2014

Day +78

Day +78 I know it has been awhile since I have updated any progress on Katlyn. Its because it is a lot of work taking care of her, and I barely have time to do much extra. It's getting better though as Katlyn is also starting to feel much better. Up until a few days ago, Katlyn didn't even have enough energy to get off the couch. Her days were spent taking her meds and trying to eat through all the nausea. She has a virus right now with runny nose, sore throat and a cough, but I can tell she is already starting to feel better. I imagine she must have picked it up at one of the hospitals because we have not been anywhere except the hospital with her, and she had the runny nose before we even brought her home. On the plus side though her pediatric immunologist at the IWK said she already had a few T-lymphocytes on flow cytometry. This is amazing news!!! So hopefully Katlyn's new immune system can take care of this one on its own slowly. It really blows me away how far she has come. She is now wanting to get around more. She doesn't have any interest in sitting on the couch at all. She is starting to joke and laugh again. I can also tell that the effect of the steroid is starting wear off too, as the aggression and nervousness is also going away. She had been super dizzy last weekend, which was a huge scare for us. That also seems to have gotten better. She wanted to decorate for Halloween a couple of nights ago, and we made roll out sugar cookies. Last night we carved our first pumpkin of the year. My heart just melts when I see her coming back. For instance when we were carving the pumpkin, she was laughing and having a time while putting pumpkin guts on my arm. She would also randomly just look up at me and tell me that she loves me. This really is the hardest thing I have ever done in my whole life. To have to watch her in so much pain and discomfort. Watch her struggle the way she has had to. This is not easy for her. I am starting to see the light though. Her little smile tells me we are getting closer. She told me a couple of nights ago that she was so happy because she felt accomplished an fulfilled. On the bloodwork side of things this continue to look pretty good. There was a question last week as her liver enzymes had become really elevated. They thought it may be a virus, her septra or gvhd. If it was gvhd, we need to prepare to stay in the hospital with her. So we stopped the septra and she never had any this week. Her liver enzymes came down quite a bit on Wednesday, and it looks like the culprit is the septra. Her platelets and hemoglobin and white blood cells also have come down, not to a scary level, but septra is also suspected. Septra protects Katlyn from PCP pneumonia as well as some other bacteria infections. She will not be able to have it though, and instead she will have Pentamidin inhalation instead. This is only given monthly which is nice, but it only protects her from the PCP pneumonia. I ask for your continued thoughts and prayers for Katlyn. God has been good. The support we have received is amazing. It really has been our backbone through all of this. Thank you.