Day 40 & 41 at St Jude

About 1am, the nurse let me know that Jesse’s line culturing was graham positive. At this point all I know is she has an infection in her line. I don’t know what kind 🙁

They did start her on vicamycin. And since 8pm last night she (knock on wood) has not run a fever.

The nurse practitioner stopped by this morning for an evaluation of Jesse. This was after Jesse had been weighed. She has gained .3 kg. Maybe this will keep the nutritionist off my back. We also talked about the fluid rate.

She felt that 55 was a little high and cut the rate to 40. She also mentioned that Jesse needed hemoglobin, her platelets are ok, her ANC is 0, and White Blood Count is 0.1.

Around 1pm, Jesse was surprised by her sister and dad arriving.

The infectious disease doctor came by. He is also the attending for the floor as well as the lead doctor of the Ethel study. He told us that the cultures were coming back variable. And until we knew what it was, we would keep Jesse on vicamycin and sephlapin.

He also told us that more than likely Jesse will be removed from the Ethel study. There are a couple reasons she’ll be removed.

1. The new infection in her line indicates that either she has the placebo or the ethanol doesn’t work for her.
2. They aren’t sure if she has a urinary tract infection, but if she does, then she is definitely out.

While it is a bummer, in a way it is one less thing to worry about.

Jesse’s red blood finished a little before 4pm. The nurse prepared her GM-CSF shot while I prepared everything for a sterile as possible clave and tape change. Jesse had agreed to allow the nurse to give her the shot if I’d do tape and clave change. But when the nurse came in, Jesse changed her mind. She wanted me to give her the shot. I have no idea why she wants me to give her the shot, especially when there are people around who have far more experience.

We got the shot out of the way and began tape change. I did better with getting the betadine right this time, but forgot the Velcro strip… causing me to have to start all over again. Jesse was very patient while I redid the cleaning of her site.

After finishing this, Chris and I went down to grab the mail.

Thank you card George & Margaret, Knob Creek Methodist Church, Jim and Jackie, Jim and Terri, and Mt Pleasant Baptist Church Bible Study for the cards and well wishes.

Thank you NC Family for the Minion hats. The girls love the hats. Thank you Jimmy, Melinda, Emiliegh, and Landan for my flip flops, food, socks, cards and drawings for Jesse, horse and ring. She loves the ring. Thank you Aunt Phyllis for the doll, clothes, Hair-do Harriet, flippy, gluten free food, snacks, games, hat, and coloring books. Jesse has changed the doll’s clothes already.

After opening everything, Chris and I went to RMH so I could clean the room and wash clothes. I think everyone else had the same idea at RMH last night. It was midnight before the last load finished drying and I got to pass out. Chris was out by 9pm.

At 7am, Chris was wide awake and complaining that she was hungry. We called Mike and asked what Jesse and he’d like for breakfast. They choose doughnuts, so Chris and I ran to West Memphis Kroger.

Mike told me that Jesse reached a temperature of 99.9 last night, but that it went down on it’s own. Fever here is 100.4 twice in one hour or 100.9. Her hemoglobin was 7.7, platelets 23, ANC 0, and white blood count 0.2. I am hoping that maybe just maybe it is creeping up.

Since her hemoglobin and platelets are low, she had both transfused today.

This afternoon the attending doctor stopped by to tell us the infection in her line is klebsiella pneumoniae (The CDC’s page about klebsiella pneumoniae). He mentioned that antibiotics would only change on Monday if the lab tests showed one antibiotic worked better for treating it.

This is bacteria that is inside all of us according to the attending. He was relieved that it wasn’t E. coli again.

He also told us that they counted 40,000 colonies of the bacteria in her urine sample. St Jude doesn’t consider this to be a urinary tract infection until they count 100,000. Because of the stents Jesse does have a possibility of having infections.

He commented on how spunky Jesse looked now compared to when he met her at Christmas. He also mentioned that the cultures take 24 hours after the first ones show no growth. This is a good sign that the sephlapin has stopped the infection in her blood and line.

Shortly after he left, the fellow appeared. She told us that they would be stopping the vicamycin because the sephlapin covered this bacteria.

After awhile Jesse began complaining that her left back flank was hurting. We called the nurse because of concern over the stent. She has brought Jesse oxycodone and a heating pack while we wait for the doctor to decide what they would like to do.

The nurse came in around 2pm to tell us that they were moving Jesse to a different room. When we’d been admitted, the solid tumor side was full. They’ve moved us over to solid tumor now. And into a room away from the internet. So I get to play the up and down internet game again. I’m so tired of this.

At 3:45pm, the new nurse came in to give Jesse her shots. She took one and I took another, and we gave them simultaneously.

Afterwards Jesse wanted to walk to the covered porch and checkout the library. She’s been awake since 5am and had Benedryl and oxycodone, my hypothesis is she is fighting sleep.