Day 79 at St Jude

Totally over this place. I know they do wonderful things in saving people’s lives… but I am still over it. I am tired of not being heard. I am tired of it being assumed I am divorced and not working. I am tired of the internet that fails to work. I know they do a lot to help families financially, and I should be grateful and just accept that we are going to have to sit places and wait.

I am tired of the be courteous signs and the woman always saying please and thank you are magically words. Yes they are… but you need to stop directing that visitors need to be polite message at visitors and direct them at your people. You need to tell them to explain things fully instead of in halves. To be courteous of patient’s time. Yeah you work and need to be here. I have to be here to save Jesse’s life. She doesn’t want to be here and neither do I.

You also need to make your employees have to spend a month being a patient here. I’m tired of being expected to be on time, but you don’t have to be. I’m tired of being told 48 hours for this and that to then have it extended. Pick a time, and just tell me one. Don’t inflate hopes and then tap dance on them. And maybe in my head I should just start adding plus one week for anything they tell me. And plus one hour to really be seen. Tired of it. It’s rude.

The reason I am so angry is Jesse’s schedule. Yesterday the transplant doctors told us she wouldn’t be infused till around 6pm. And if it was later, we’d go on their floor, get infused, watched for 2 hours, and then we could leave.

Looked at her schedule last night, it said 12pm. Waited and looked again this morning, 12pm and 6pm. But 6pm is to be admitted. Feeling that this was a double booking, I called D clinic. They had no idea, and transferred me to B Clinic, which is the transplant clinic. The scheduler there had no idea, but said she have someone call me back.

The woman that called said they wouldn’t know the infusion time till 3 or 4 pm. Because of this we’d need to come over to the Medicine Room at 12. I tried to point out we’d be sitting in the Medicine Room for 4 hours for no reason, when we could sit at the Grizzlies House for that time in more comfort. She totally didn’t understand.

I was so hot when I got off the phone with her. And I purposely didn’t leave here until 12:05pm. At isolation check in the nurse had no idea why we were there. In fact, when she called the Medicine room, the lady couldn’t find us on the schedule. I explained to the nurse what was going on. She decided to go talk with someone.

When she returned, she had found out that we would have just been sitting in a room for 4 hours. With some back and forth between clinics, it was determined that Jesse and I would return to the Grizzlies and wait for the call to come back. I greatly appreciate her taking the initiative to find out what is going on.

As we were leaving, we got a call from D Clinic. The person apologized for the confusion. She told me that if the infusion happened before 8pm, Jesse would not be admitted. Afterwards, she would have to stay overnight. I am not happy about this either because the transplant doctor told us no matter where we were at Jesse would be able to leave after 2 hours.

So Jesse and I have returned to the Grizzlies House to wait. I wish I could go for a run to blow off this steam, but I wouldn’t have anyone to watch Jesse.

At 4:30pm, I gave Jesse her shot and medicines in preparation for the phone call about the infusion time. A nurse from the Medicine Room had called around 3:30pm saying they’d call an hour before the cells were ready.

At 5:30pm, the call finally came. Jesse and I headed to the Medicine Room. Jesse was very confused thinking that she’d have to stay overnight. And because she didn’t want to her, her blood pressure was 132/100. I got her to calm down by calling her sister and friends. She and I had been told at 12 when we came over that if Jesse had to be infused after 8pm, she’d have to sleep on the 2nd floor. Jesse doesn’t want to do this because she can’t sleep hanging onto me. She has nightmares most nights, plus when she is awake during the day she has to be touching me in some way. She’s also very paranoid about where I am. I walked to the trashcan yesterday and she started to freak that I was leaving her.

Jesse wanted a Powerade, so I went to find her some. They give you a card here that will allow you a certain amount for food. It is very generous of them. But thanks to the person who decided she was going to be inpatient that cut her food allowance. This will cause me to have to call patient services in the morning to make sure it gets changed to outpatient funds again. It is very nice of them… and frustrating at times.

At 6:50pm, the transplant team came in, pushed the cells in over 5 minutes, and left. Jesse and I hung out for another 2 hours for monitoring. And by 9pm, we were headed back to the Grizzlies. Jesse was elated to not have to sleep in the bed at the hospital. Plus the nurses in the Medicine Room treat her like gold. One had brought her a fairy coloring book.

It’s frustrating at times because you have people here who are obviously here for the job, and you have people here who want to improve lives. The people that want to improve lives talk to me as if I am an equal and treat us with respect.

Thank you Alex and Joanna for your donation to St Jude. Thank you Faye for the package of goodies. Jesse enjoyed coloring and playing with it.