Mike arrived around 7pm last night. He mentioned the plane ride from Charlotte to Memphis was like riding a roller coaster. Jesse was so excited to see him. He arrived at a good time. It was pouring freezing rain, mixed with lightening and thunder, and wind.
This morning, Mike was due at St Jude at 8:30 to begin the aphresis. Preparation takes some time, so it was about 10:30 before they started. Jesse didn’t have to be over until 10:30, and it was a very slick walk over. I did slide one time, but luckily I didn’t cause us another incident report.
We arrived at the isolation doors as a employee was coming out. Thankfully a man was coming out, who warned us it was wet and very slick right inside the door. If he not warned us, I would have been on the floor. Once we reached the phone, I called Jesse’s clinic. Busy signal. Called again, busy signal. On the fourth try, we finally got an answer. And it was 10 minutes before someone came to get us.
Because of the weather only 2 nurses had made it to work. Our doctor didn’t even come in. Due to being swamped, it was 11 before our nurse came to see us for labs. She needed 2 urine samples from Jesse plus a fecal swab. The swab was part one of two for coming out of isolation. The next one will happen next week. She got Jesse’s weight: 16k or 35.2 pounds. Yeah! Her blood pressure was unfortunately a little elevated, but they haven’t put her on medicine for that.
Jesse was supposed to see the teacher, but she didn’t appear. She was also supposed to see the dentist, but that was moved to Wednesday. It was 12:30 before we saw the nurse practitioner. I asked her for more of the aprepitant. She seemed a little confused that we even had that drug. I asked her if there was a reason that she shouldn’t take it. She told me that they usually start with 1 dose then give 2 more. Once again I am not 100% sure what she is thinking… and she doesn’t communicate with me.
She did agree to give us two more doses of the aprepitant. We decided to try the zofran in pill form. This is better for me because I can just give her the pill and not have to wait 30 minutes to disconnect anything.
The nurse practitioner also felt because she gained 0.4kg that Jesse didn’t need to stay on the IV fluids. Jesse was thrilled to have that and the diluadid taken away. I am too because now she can be more mobile. The doctor who was handling clinic for the day came into see us. I like her. Nice lady, on the ball. Had no trouble giving us the aprepitant.
We had to wait to see the transplant doctors. Our clinic nurse poked her head in the door. She said they were coming and to let her know when they left so she could get us out of there. She commented that we’d been waiting a long time. We seem to always be doing that here.
While we were waiting the pharmacist called about Jesse’s il-2. She didn’t make a lot of sense, and because the doctor didn’t come in today, I couldn’t really help her. She said they’d call me on Sunday.
At 3pm, Mike was done with his aphresis and called to see where we were. I told him we were in room 11 of D Clinic. A few minutes later, there was a cautious knock on the door and his head poked in. It was obvious that he was hurting from the aphresis from his facial expression and walk. He sat for a minute, then left to return to our room to get his flight information to see if it was leaving on time.
About 3:30, the transplant team came in. The transplant doctor was very pleased with the nausea medicines that Jesse is taking. The plan is Jesse will come to the medicine room at 6 or 7pm tomorrow. They will infuse the cells, watch her for 2 hours, and we’ll leave. They only kink is the snow and ice that fell. This might cause the cell cleaning to start later. If this happens, then Jesse will go into the a room on the Chili’s care center floor to get the infusion.
As we were leaving the clinic nurse told us the fecal swab came back clean. We don’t know about the urine yet because we didn’t collect it till about 12pm.
The schedule for tomorrow has her over at St Jude at 12pm. But they are supposed to call me. I’ll have to see how it goes. When I returned to Grizzlies, it was time to give Jesse her shot. She has been obsessing about this since last night. And I don’t know why, but this time she didn’t even scream when I gave it to her. She was as surprised as we were. I am wondering if the ativan has a lot to do with that.
For Mike, he had to leave at 5pm to catch his flight. He’d been hoping, and we had to, that his flight would be delayed. It was delayed by 30 minutes, but that didn’t happen till he got to airport. And now he is concerned that he might be stuck in Charlotte.
Jesse was crushed when Mike left. But I reminded her that we might get to go home soon. Tonight when we talked to Chris, Em, Landan, and Melinda; I joked with Jesse that when we got home I was going to hug the house, the mailbox, kiss the driveway, hug the garage… Jesse started to make a face. We asked her what the trouble was. She said that I shouldn’t hug everything because it would embarrass her. Mwah-ha ha
Oh, how Jesse made me laugh! Lots of hugs!!!!! Hoping you get to come home soon to recharge!
I want to make Jesse a little hooded cape to wear. I recently knitted one for the granddaughter of Mom’s boss (my boss too during the summer), who is at John’s Hopkins for possible neurological problems. She really liked it and I thought that Jesse might want one too! I think I may put a dragon scale pattern on the edges because Jesse seems to be the awesome kind of person that would like that. But I am not sure how big Jesse is. Could you measure from her neck to her hip so that it will not be humongous? I’m using superwash yarn, so you’ll be able to put it through the washing machine. We all still have lots of prayers going for Jesse and you and your family.