Kaitlyn had an appointment with her infectious disease doctor on Wednesday. The appointment went well, she weighed in at 9 lbs 7 oz (more than double her birth weight!) and all appeared fine. I refilled her prescription for her anti-viral and got some labs done and went on my way. Later that night, we had a message from the doctor saying that the labs showed issues with her blood and we needed to stop the valganciclovir (again). I was worried about this because when she was off the medicine last time (due to severe anemia) she was very uncomfortable and fussy and we believe that is when she lost the hearing in the right ear. The medicine has been shown to preserve hearing and really does a good job of kicking the virus out of her system, but it carries with it significant side effects.
I talked to the doctor the next day and he told me that the main problem was neutropenia, which is an abnormally low count of neutraphils, a type of white blood cells that help protect your body from bacteria. Anything below 1,700 is low, anything below 500 is considered severe. Kaitlyn's count was 300. She is also dealing with anemia again, though it is not too significant.
We went to the hospital yesterday where they gave Kaitlyn an injection of a drug called neupogen which helps the bone marrow create more white blood cells. It is a simple procedure, just a small injection in her thigh, but she needs it 3 times per week. So, every Monday, Wednesday, and Friday I get to load up my girls and drive to the hospital. She will need this for 8-12 weeks. Thankfully, we live very close to the hospital.
As for the anti-viral, it was decided that we will give her a half dose, every other day. Her viral load is very low, 600, and we would like to keep it going down. I have definitely noticed a difference without the full dosage (though the doctor doesn't believe me) and she is spitting up a lot more. However, it is not nearly as bad as it was when we stopped the last time.
On a lighter note, Kinsey is getting the medical lingo down. Here are a few things she has been saying...
"Are we going to the pharmacy to get Kaitlyn's meds?"
"Can we get some food after Kaitlyn's labs are done?"
"Did you give Kaitlyn her vitamin D drops, Mom?"
She knows most of the doctors by name and enjoys watching Kaitlyn get her blood drawn. She loves chatting with the nurses and doctors and jabbers on and on about how she is 3 and her birthday was in "Heptember." I'm glad she is around to keep things fun. The other day she said, "We don't poke babies, only doctors can do that."
1 comment:
Oh my goodness, Kinsey just jabbered on and on today about her sister and everything. She was so cute! By the way, I'm sorry I missed your call twice! The girls were probably being too loud for me to hear my phone ringing. They had such a fun time together!
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