Update on Kylie:
“Being a medical mom feels like being a solider in a war, you never get a chance to relax and breathe, you ALWAYS have to be on alert and ready for what “surprise” is next…
With two autistic kids and one transplant toddler, there is never a dull moment.
So, after a LOT of back and forth between all of Kylie’s medical teams, Childrens National in DC does not feel comfortable giving Kylie the treatment (chemotherapy drug). So we have to travel to Texas to get Kylie the treatment. One of the drugs called rituxan (I finally figured out the name) is given to a lot of transplant patients in rejection but because of specifics DC doesn’t feel comfortable giving it to Kylie.
Kylie has started to develop a new symptom. She has a lot of increased fast abdominal breathing.
Every patient has a baseline and this is considered their normal, so every new symptom compares to a patients baseline.
Ex. A patient can have a resting heart rate baseline of 110 and they are 100% okay; however another patient could have a baseline of 70 bpm, so a HR of 110 is concerning.
I say that because a lot of people in the past will say that a HR of 160 for a baby is normal, but for Kylie that is concerning (her baseline is 110-120) and that tells me to keep an extra eye on her.
Anyways, Kylie has fast abdominal breathing (this is not normal for Kylie) and her sats have not been around her baseline lately. While sleeping her sats have been hanging around 92 (her baseline is 97-99) and while awake her sats have been around 95 (her baseline is 98-100).
Because of this we will need to do some testing to rule some things out. Obviously, a respiratory panel to see if she has caught something. I’m almost hoping she caught something because if that’s not it then I’m worried it’s related to the rejection. That wouldn’t be good.
PLEASE pray that Kylie’s breathing returns to baseline.
I really want her home for Christmas. We are celebrating and pretending this Christmas is her “first Christmas” since the previous ones have always been spent in a hospital.”
Let’s continue to lift this precious child up in prayer!
Lonnie
