Thank you for praying for our flight back from Seattle to Illinois. We got to sleep in our beds at home for one night, and then we headed for Chicago. We were expecting to have an easy lab/clinic and go home, but that didn’t go the way we had anticipated. Ella Joy started to feel extremely cold this morning before we headed to Luries. She then started to get headaches. Her blood pressure and heart rate was too high and her temp is creeping. Please pray that God would protect Ella Joy and help her body to feel better soon. We recently found out that the pred Ella Joy hsas been taking has been suppressing her adrenal glands, reducing the levels of hormones secreted by her adrenal glands. We need to carry an emergency hydrocortisone needle dose, and she needs to get 2 doses every day as well.
When we first got to Luries this morning, there were no labs ordered for her and they did not have any knowledge of her extensive med list. I had to tell them every single med she is on, and thank God I memorized each med and dosage. Please pray that she would be able to get the meds she needs. Insurance has been disputing some of the essential meds she needs and has been taking with the Illinois Walgreens pharmacy. Getting refills has been tricky since the Seattle team is not legally allowed to re-fill orders for Ella Joy, but our Illinois oncologists are not exactly sure what she needs.
There was no timed labs for tacro ordered, and I was actually thankful I gave it to her this morning, since it is a time sensitive drug, and the lab draws would have been way too late by the time they would get to draw her labs.
Tomorrow, we are going to need to come into Luries again and get her labs. Right now, they are trying to see what is going on with Ella Joy. We are in the infusion center. Before we left Seattle to come to Illinois, Ella Joy went to the ER for chest pains, but were not sure what caused her chest pains. Now, we are not sure why her heart rate is so high, and why her temperature is creeping.
Praise the Lord that Mike was with us today! We will have to stay in Chicago, and hopefully Ella Joy will feel better after her labs and being seen tomorrow.
Here is a picture of Ella Joy this morning at Luries when she was feeling crummy, extremely cold, and having headaches. She fell asleep in prayer position.
“This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. ” – 1 John 5:14