Day 7 at St Jude

Around 1am, I heard Jesse call out “Mommy.” I answered with “Yes?” Her reply, “I wasn’t talking to you.” Then I heard her tell her sister let’s pretend. Not sure what they were pretending. Often they pretend that one of them is Mommy.

Jesse awoke around 4am wanting to use the bathroom. She was convinced she had to pee, but with the bags she has had the sensation twice before and no luck. She used my hands to pull herself from the bed. I got her to clasp her hands around my neck while I got her ready for the toilet. Then we got her on the portable with a pillow behind her back to make it a little more comfortable.

After an hour, Jesse was done. No luck on #1… but at least we did have #2. The antibody can lead to diarrhea so the days to come might be more.

She begged me to hold her hand and put a movie on the TV.  I finally figured out how to get the chair I could roll next to her bed to recline (yeah!).  I dosed in and out while she watched the Lorax and held my hand. She finally dosed off at sometime and slept until until around 9am. She still had delusional dreams. One time she started crying that Landan pushed her. I’m sure they were arguing about something in her head… and she probably deserved it. And that might explain when I told Landan to apologize, she kept saying he wouldn’t.

Mom came over to allow me to go to breakfast before the chemo started. I ran into the nurse practitioner in the back hallway. We talked about Jesse and the neuronton, if we were just prolonging her pain, and my feelings of guilt for even thinking that and how it sounded to myself like I was giving up on her. I want her to live. I want her to grow up with her sister, to fight with her, to do everything that she wants to do. I want to be able to get frustrated with her for the selective hearing.

Chemo began at 10. Then around 11, the antibody was started.  Before they gave her the antibody, the doctors increased her morphine base rate to .8ml. They also prescribed her ativan, benedryl, and tylenol. Then they gave her a .2ml bolus of morphine. Jesse felt the urge to go while this was happening. As she was sitting on the toilet, she went from talking to us to being very irritable. But she didn’t scream in pain.

At one point Jesse wanted to play rock, paper, scissors, shoe with me. I let her win the first time (she always stays on rock)… then I changed for the next time. She began crying that I won. To calm her, I let her win the next time… she started crying that I hadn’t won.

My mom went to the Ronald McDonald House to do the orientation for me. I appreciate how understanding the staff at Ronald McDonald was about me not coming. And I appreciate Mom going to the orientation for me.

With 90 minutes left on the antibody, Jesse started coughing violently. The nurse stopped the antibody. When she did, Jesse’s cough faded and stopped complaining of her throat itching. Since we stopped, the doctor on call was called to come look at her.

The nurse also brought up that she felt Jesse had way too much morphine because as we were talking to the doctor, Jesse fell fast asleep. The doctor agreed to reduce the basal rate to .7ml. She also wanted to run the remaining antibody at 1/2 the rate to see if Jesse’s throat itched.  We also talked about why they don’t start kids here with neuronton who are doing the antibody.  Our nurse mentioned that the first kid who did the study was given neuronton, but not other kids. The doctor commented on having someone in the hospital do a study on chasing the pain versus pre-treating for the pain.

Jesse finished out the remainder of the antibody snoring while sitting up, but she didn’t cough. Because we had to reduce the antibody rate she will do the remainder of the treatments at the 1/2 rate running over 8 hours versus the 4 hours. I’m fine with that. Not like we are rushing to get out of the hospital and home. I actually spoke to the doctors about how to manage her pain while she’s outpatient. They talked about discharging her with a pump. I am not honestly sure how I feel about this. She is very wobbly on the .5ml basal rate, which is where she would stay with an outpatient pump.

While she was sleeping my aunt and uncle arrived to spend the night and then take my mom back to their home tomorrow.

My family left around 4:30 to move some things to the Ronald McDonald House (RMH). While they were gone, Jesse woke up. She wanted to try #1 again. This time she was successful!

They returned at 6. My aunt, uncle, and  I went down to the cafeteria to get food for everyone. Jesse was only interested in eating ice cream.

After eating, Jesse complained of a headache, and fell asleep. We did use cold compress packs to help with her headache and put one on her leg. These are seeming to help and she dosed off. And the doctors have lowered her basal rate to .5ml of morphine. As the new shift began, her temperature began to increase again. Tonight it has reached 101.7. Earlier today it was 103.3. The doctors have ordered Rocefrin to just keep happening.

She slept hard until about 10pm tonight.When she awoke, the nurse checked her over to make sure that everything was okay. Jesse became increasingly grouchy with the nurse. I told her to stop being rude. She is still irritable from the morphine. Jesse began to cry that she was sorry. I know she doesn’t feel good, but she still needs to not be rude.

She calmed down, and asked what they have in the nutrition room. As I went out to look, she yelled after me that she loved me.  And she has asked me to scoot her close to the edge of the side of the bed where I am sleeping in the reclining chair. For the last few days she has felt so bad that she has not wanted to be touched.

I am a little concerned when she is discharged to the RMH. She’ll want to sleep with me, but I don’t want to take any chances of those bags getting ripped out on her sides. And I noticed tonight that several times she tried to sleep on her side.

Tonight she has eaten chicken noodle soup, chocolate ice cream, and asking for pretzels. Hope this all stays down (fingers crossed).