Kylie received the chemotherapy drug for rejection on Tuesday. The next treatment will be given on Monday.
Then we will wait about a week and retest her antibodies. It is crucial that they have weakened. I’m believing and praying that they are completely gone (in Jesus Name).
Kylie will receive IVIG today to help give her some good antibodies to help with infections etc.
Her dad and I have completed training on the new home ventilator. We will each do a 24 hour “room in” within the next few days.
That’s where we will do all of Kylie’s care ourself while a nurse is close by to make sure we understand all the equipment.
I did request a refresher
CPR coarse. Kylie is older now so the chest compressions change slightly once you are older than one year old. I want to make sure we are both knowledgeable and are able to help Kylie in any situation.
Kylie is doing some HME trials during the day with bleed in oxygen and is handling it pretty well. She always does well when she is on a higher dose of steroids. We are working on trying to find her “sweet spot” with her steroid dose.
We did try a PMV (speaking valve) trial (with oxygen bleed in) and Kylie didn’t do very well and she started having some retractions and belly breathing.
I’m hoping this treatement works and she can eventually go back to using her PMV. It’s easier for her to talk and she is always so happy saying her colors or shapes.
She still needs the ventilator all night and randomly through the day. I’m hopeful the treatment will work and her respiratory needs will get better.
Please continue to pray for Kylie. I desperately want this treatment to eliminate every antibody attacking her lungs.
As always, we love you all so much.
