Day 11 at St Jude

Once again Jesse and I were up at 1am and 3am trying to pee. No luck and since she was falling asleep on the toilet, I would only let her try for 45 minutes before telling her no more. At 3am she was successful with #2… which grossed her out badly. Amazingly she didn’t throw up.

Morphine can give the sensation of having to pee, and I think that was some of the trouble.

I felt like our nurse was in and out all night long. Might just be the exhaustion making me think that. And I am not upset with her, she is making sure that Jesse is okay 🙂

At 7, Jesse was up. This time she was successful with peeing. Around 7:30, the resident who can’t look me in the eye came in. She is nice, she is trying to become a doctor, but sometimes certain residents get the best of me. And especially ones that haven’t figured out how important communication is.

She did tell me, while talking to the wall, that they wonder if Jesse has an infection. They also wanted to discuss in rounds her rash on the right elbow and right chest area. They are trying to determine if the vicamycin or morphine is causing the rash to be more pronounced.

When she left, Jesse dosed back off. I stepped out to go downstairs for some coffee. As I was headed out the fellow and attending doctors appeared. He discussed with me that Jesse’s ANC had fallen to complete 0. This might be due to treatment, it being in her bone marrow, or the fact she might have an infection. The doctors are leaning towards infection because of the swelling in her leg and right labia.

They have scheduled for the infectious disease doctors to see Jesse today. While we are waiting, they are giving her 2 antibiotics: seflaphin (sp?) and vicamycin. Since there are concerns about the vicamycin causing the rash, they have slowed infusion from one hour to two hours.

It also apologized for us not going home in the foreseeable future. I point blank told him we aren’t going home to Virginia anytime soon. I would rather stay inpatient at St. Jude right now and get her over this hump.

Around 11am, it was time for the first GM-CSF shot. Jesse is no fool… she helped take off where the LMX cream was, and then went into orbit. We unfortunately had to get the clinician to help hold her down. The psychologist happened to be coming by at the time this took place. She offered some suggestions on how to get Jesse to maybe relax. I’d like to figure out something… because having to fight with her to take the shot today wasn’t my idea of fun.

After that Jesse has complained of being cold. She has 3 blankets on her and still complaining. I asked for her temperature to be taken. Right now we are 100.2 F, but I have a sense that she is climbing.

At 12:15pm, the nurse came in to start her antibiotics. She told me that with the vicamycin at 1pm today the pharmacist requested we run it over 1 hour. If Jesse turns red or starts itching, then we’ll know she has an allergy and will be documented in her chart. She will still get the antibiotic, but it will just take 2 hours to run it.

She asked if I wanted her to take “Bob” the pulse-ox off Jesse’s finger. Since Jesse was asleep, I opted with leaving it on. I feel better with it on to know her oxygen level and heart rate. Good thing Jesse was sleeping… if she’d been awake – Bob would have been kicked to the curb.

At 12:30pm, the resident returned. She told me the vicamycin will run over 2 hours. I didn’t even bother to tell her what the nurse said. It would be nice if she’d made the effort to stop by the desk and confer with the nurse before coming to talk with us.

Afterwards the discharge nurse stopped by. She took one look at Jesse and felt that she had topotecan rash. We talked for awhile longer. She mentioned that many kids who get the cycle Jesse just had, have their ANC tank really fast, plus they end up being inpatient until about 3 or 4 days before the next cycle starts. I’m really okay with that. We aren’t going back to Virginia anytime soon… so might as well sit tight.

Around 2pm the research nurse appeared to check in. Fifteen minutes into our conversation, the assistant doctor (I think) to the infectious disease doctor came in. That is another frustration of being in a hospital. They all send mind signals to one another the time they are planning to come… and everyone shows up at the same time.

My meeting with the research nurse was cut short as the doctor examined Jesse and asked me questions about where we live, what Jesse has been exposed to, and other questions. She did tell me that if it was an infection caused by staph, then Jesse is getting the right antibiotics.

After she left, I figured it would be awhile before the infectious disease doctor came to evaluate Jesse. Wrong. Ran downstairs to get our mail and a drink, and he was waiting when I got back.

He looked at Jesse and from talking with his colleague, decided to order Jesse an MRI of the pelvis. We will also watch her CRP levels. I am not 100% sure what those are. But the doctor did tell me they will give them a base line idea of what is going on. Plus the CRP levels don’t change as fast as other levels.

They left to schedule the MRI and talk with Jesse’s primary team of doctors. The fellow and resident came in about 4pm to tell me that Jesse was scheduled for an MRI of her right leg and pelvis at 7:15am. I am very surprised that they were able to make that happen so quick. So nothing to eat after 11pm. Yeah that hasn’t been hard… she has wanted nothing to eat today. And I am not pushing her to eat anything.

Jesse and I opened the cards after the doctors left. She actually livened up for the first time today and really got into it.

Thank you to Uncle Jim and Aunt Terri for the monkey hat and gloves. When Jesse feels up to it, I will get a picture of her in it to you. She hasn’t felt like any pictures.

Thank you to Mrs Edwards’ class at Norge for the wonderful cards. Jesse loves the ornament you sent, and wants to hang it on her door.

Thank you Cupp family for the gluten free goodies. My feet will love you for not making them itch 🙂

Thank you Susan Core for the card. Thank you Betsy Mckenna and Dena Goble for the cards and stickers. I’m sure once Jesse feels better she’ll be sticking them everywhere 🙂

Thank you Goins family for the cards and pictures. Jesse loved the drawing and coloring. And thank you for your offer of help. Mike and I really appreciate it.

Thank you Donna Martin for your card. Thank you Hillary for your cards. Jesse really enjoyed what you wrote, as did I. And I am sure when Mike arrives on Friday, he’ll be moved.

Thank you to everyone who has offered to help Mike at home and myself here. We really do appreciate the offer.

Jesse was exhausted afterwards and fell asleep. Her nurse came in to get vitals around 4:30pm. She mentioned to me that she talked with the doctors and will mention to the night nurse for rounds tomorrow about getting her off morphine. She feels that there is a better pain medicine for Jesse out there. The morphine makes her itch.

I have been trying to tell the doctors this, but I obviously haven’t been clear enough on the fact I want her on something else or if there is something else less itchy for her. Really hoping they will take her word better than mine and give her something else. I do have to say I have really like all the nurses we’ve had on the floor. They are all very caring and devoted to the kids.

Jesse is awake now and watching Scooby-Doo Big Top for the 4th time. I’m glad she enjoys it.