So I am feeling a little frustrated. Hospitals are the equivalent of prisons. It takes forever to get you out the door and into the world where you can really rest and relax. Plus we are only here for 10 days, Jesse and I need all the time we can get at home safely.
On Sunday, we cleaned and played. Monday, Jesse and I had to travel to CHKD for lab work. No biggie because we’d get to come back to the house. Jesse is wanting to get to school for a visit in the worst way.
Before we headed down we waited to put Chris, Emileigh, and Landan on the bus. Casing them around in the morning to get ready for school was actually riot once I got them on the bus. Landan wanted to wear Jesse’s pants to school. I was able to compromise with him on a shirt. Chris and Emileigh spent 30 minutes doing their hair. I finally told them it was windy outside, meaning their hair was going to move.
It was fantastic to see everyone and visit with her oncologist. He put it the best I have heard about St Jude. They are the major leagues. To which I replied, I am obviously a minor league person.
By 12pm, Jesse and I were headed up the road to get Christine off the bus. While we were waiting, Jesse unfortunately threw up. I gave her an ativan to calm her stomach. I guess I have gotten so used to the state it puts her in. I don’t even really notice that she is drugged. At the bus stop, she kept poking McKenna, our 2 year old neighbor, trying to figure out what she was wearing. McKenna just looked at her like “what are you doing?” She also got fixated on a package they’d received from Target.
After getting Chris off the bus, we stopped to speak to Aunt Phyllis and Aunt Dale. Then she ran around in the yard playing with Chris.
In the evening, Joe, Talyor, Jen, Melinda, Landan, Emileigh, and Jimmy came for dinner. While Joe and Taylor were sitting with Jesse, they noticed she was feeling warm. Taylor took her temp: 100.9. we got her undressed and took it again: 100.2. Jesse was laughing and talking with us. She wasn’t channeling the normal diva.
At 9:05pm, I took her temp again: 100.4. So we started the hour wait. At 9:50, 100.5. We put in a call to her oncologist here. He wanted to culture her caps to be on the safe side and give her either rocefrin or meropenem. If we did the mero, we’d need to spend the night. From having to go through the Emergency Department here, we figured it would be six half, one dozen of the other to go through staying the night.
Jesse was far from pleased about this, but when her temperature hit 104.1 this morning at 4am, I feel that we did the right thing. Now we are waiting to see if they can get her meropenem eclipses from Sentara before we can leave. Her urine is a little cloudy again.
I am so tired of this. Here we are on a 10 day leave from St Jude and can’t even stay out of the hospital. I am so tired of cancer and the side effects of treatment. And as tired of it as I am, Jesse is probably 3-fold as tired of it. And the other part of me says why can’t I have two normal kids with the occasional cold? What did I do to the universe to make Jesse suffer? (Yes I know the answer is always nothing. But occasionally I feel like it was something. Why should any child have to suffer through this crap?)
It was hard not to drive down the road last night looking at other cars wondering if their lives felt as screwed up as mine. And part of me saying well yes they might be. I thought about the man on the plane who sate next to us and lost his daughter last year. And the little boy flying alone to visit his deceased father’s family in Florida because his mom couldn’t stand to live in Florida after his dad died.
Right now we are trying to get the eclipses sent to the house for Jesse and move the discharge process along so she can enjoy some of this day outside of a hospital.
It’s now later, and we are home. By 3pm, we were able to leave. Jesse is really happy to be home.