Day 19 at St Jude

Last night Jesse started the “Ethel” ethanol study. For her white line .5ml of fluid was put in her lumin and left for 2 hours. To make sure Jesse was ok, her vitals were taken ever 30 minutes. After 2 hours, the fluid was removed. New fluid (.6ml because the red lumin is larger in diameter) was placed in the red line and left for 2 hours. And again vitals were taken every 30 minutes.

Jesse did well, sleeping through most of it.

This morning at 7am the fire alarms going off woke us up. Turns out the maintenance team was working on the heat. Since I was up, I grabbed a shower and started a load of laundry.

Jesse felt like eating a milkshake this morning. She also didn’t want to be in the bed at all. She has wanted to sit in my lap all day.

At 9am, the resident came in. She told me the ultrasound yesterday didn’t show anything that the doctors were concerned about. And her CRP (a number infectious disease doctors watch) went from 15.8 yesterday to 5.9. The night nurse had let me know before she left, Jesse would need platelets. Her hemoglobin is 9.0. Her ANC is still 0, and her white blood count dropped to 0.3.

Her main nurse practitioner stopped by to check on Jesse.

The platelets came around 10am. Platelets don’t take long to transfuse. And as they finished up, her Child Life specialist stopped by to give Jesse a doll she could draw on. After Jesse drew a face and clothes, the specialist showed her medical tools and bandages she could use on the doll. Jesse opted to place a line in her doll’s arm.

Jesse used the bathroom right before her shot. Unfortunately she grossed herself out and threw up. Right after I had gotten off the phone from ordering her pasta with tomato sauce. She did eat some of it.

When she was cleaned up, it was time for her GM-CSF shot. She is really over getting shots. And sadly this isn’t going to get any easier.

Afterwards I ran down to grab a bite of food. When I returned, Jesse’s main doctor stopped by to see her. He mentioned a PET Scan with CT scan when her counts return. A PET scan is an potential hour test where they put radioactive glucose in her veins. The active cells in her body will take in the glucose, which lights up in the scan. But this won’t tell us the difference between tumor and infection.

As he was talking to us, her infectious disease doctors stopped by. They told me that Jesse had a strain of E. coli that was resistant to most antibiotics. They asked if she had diarrhea. If she did, then they were going to recommend putting her in isolation. Luckily Jesse didn’t have diarrhea today. So she gets to stay in 2064… and they are removing an antibiotic. Also helping her to stay out of isolation is that her E. coli responded to mirapenin (it’s an antibiotic… not sure of spelling). This has given her negative for infection cultures the last 2 days.

Then the attending doctor came in while the other 4 doctors were in the room. They conferred about Jesse. Then the 4 doctors left while the attending examined Jesse. Then he headed out just in time for Jesse and I to face time her class at Norge.

This really lifted Jesse’s spirits. She has been starting to get really homesick. She loved watching her classmates dance. And I really appreciate them allowing Christine, Emileigh, and Landan say hello. Seeing everyone made Jesse want to start the school program here. She had been telling me earlier in the day she didn’t want to go to school here. I think she has it in her head that I will be separated from her during school time.

Our time with them was interrupted by the “Ethel” study doctor stopping by. He was coming to see how Jesse did with the first round of the study. He is a really nice guy and took the time to say hello to Jesse’s class.

After he left, the social worker stopped by to see how Jesse is doing.

Around 3pm, a volunteer stuck her head in the door to invite Jesse to paint a clay bank. I know that people mean well, but I wish she’d talked to the nurses first to see if Jesse could go paint. I checked with Jesse’s nurses to make sure Jesse wasn’t on any precautions or restrictions since she had the E. coli. Jesse wasn’t. And when they removed the ethanol (or placebo), Jesse walked down to paint a unicorn.

Afterwards she rode Fred the IV pole to patient services to get the mail. Thank you Team JoJo for the care box with the DVD, hat, flashlight, Doc McStuffins coloring pad, and other goodies. I have a picture and I’ll send it to you tomorrow. Thank you John, Beth, and Alex for the unicorn, Pegasus, fairies, and hat. I have a picture for you guys too of Jesse in the hat. The hat you made is amazing.

Around 6:30pm, I told Jesse I was going to the cafe to get dinner. She started crying because I was leaving her. I finally got her to understand that I would be gone 10 minutes at most. Separation anxiety seems to be the theme today. She has sat in my lap most of the day. Tonight I can’t get her to lay down in her bed because she is determined to sleep with me in this chair… which absolutely can’t happen because of the nephrostomy bags. I absolutely do not want to be responsible for pulling those out.

The doctors also increased her pain medicine tonight. Jesse seemed to have more pain in her right leg today. The pain doctors will be consulted starting tomorrow to see what we can do to help Jesse feel like walking on that right leg.

I’d like to thank Ginnie Green, Mrs Carlsen, and all those at Norge involved in setting up the face time with us today. And thank you to the Ms. Turner for letting the kids call Jesse during music centers. Jesse is telling me she really wants to do that again. I do too 🙂 Thank you again.