Day 43 at St Jude

Well I finally did it. I tripped over the pole… taking it and Jesse down. By the grace of God, I didn’t pull her CVL out of her. I can’t tell you how horrid I feel. Jesse has a scratch on her back at the base of her neck. Right now that is the only visible sign of the accident. I am praying that I haven’t caused her more damage.

This morning started out like normal. Her ANC is still 0, hemoglobin and platelets are good, and white blood count has climbed to 0.5. I really hoping that this climb and lack of nausea is a good sign for her ANC.

While I was on the staff meeting, Jesse went to the nurse’s station to draw and visit. She wasn’t gone long, which is fine. I have trouble asking the nurses or volunteers here to watch her because I feel that she is my responsibility. And I feel guilty asking others to watch her.

The nurse practitioner stopped by before Jesse left to check her out. She mouthed to me that she’d be back to talk later.

I set up the table with Jesse’s basket of stuff. She stamped for a bit, then she did a little homework. Afterwards she played with play dough. And in between all that she ate yogurt with nuts and chicken noodle soup.

The doctors for oncology stopped by to talk about her right labia and over all health. They are pleased with how she looks. She told them she was feeling froggy. It’s a term we use at home for feeling spunky.

Jesse wanted to try some ice cream later on. She rode down on the pole to the cafe with me, and just like this morning when she rode Fred down, we returned unscathed. And I, like a twit, failed to see where her pole surfing could totally go wrong.

Around 4pm it was time for the shots. Today was the last day of IL-2 for this round. The nurse gave her a shot and I gave her a shot. The nurse had to give the IL-2 because we are inpatient.

Yeah got in trouble twice today… before the shots, the line care team came around to check things. Turns out that I am not supposed to change dressing while we are inpatient even if Jesse asks me to. The supervisor for the solid tumor side misunderstood when I said she asked me to. He thought I meant the nurse asked me to. I quickly told him that no, Jesse asked me to.

Jesse was really upset to hear that I couldn’t do the changes while inpatient. And it frustrates me a little too. I understand that they are conducting a study to see if doing sterile inpatient dressings are better than doing the gauze dressings. And my doing the dressing change could mess up the study because I am not a nurse nor an employee.

After the shot was done, we head down to patient services to check the mail. Jesse had several cards and 3 packages. And here is where I royally screwed up. I should have not let her ride the pole. I should have told her that I couldn’t care everything at the same time and made 2 trips.

But nope, thought I could do it… and was afraid that she would insist on coming back with me. I got the packages situated. As I turned her, myself, and Fred around I realized we were falling over. All I could think about was, “Crap where is Jesse, where is the CVL, where are the lines?” Along with “OMG what kind of parent am I?”

A nurse was down there with a new family getting them registered. She rushed over and helped us up. She called someone on the phone, and within minutes she was at our side. Jesse was balling from fear. And I felt so ashamed. There were 10 people down there that all saw us go down. I expected social services to show up to question my delinquency.

The nurses got us back upstairs, which was very nice of them. They insisted that I fill out a fall report for me. I know they have to have something on record in case I claim an injury of sorts. I have no intention of doing that. This was totally my fault. I am just praying that I didn’t harm Jesse more than the scratch on her neck.

Her nurse checked her CVL. That velcro strip they use to help hold the line in place is best thing since sliced bread. If her line was tugged at all, it held her line and loop in place.

As I was telling Mike what happened the child life specialist just stopped by to check in on us. She was surprised to hear it had happened. And reassured me it happens all the time and a whole lot worse. I appreciate her effort… still feel like I failed my kid. I have no intention of trying to take her out. None.

After she left the infectious disease doctor, who is the head Ethel study doctor, stopped in. He asked if Jesse had had the Ethel. I told him no because when I asked the nurse this morning about it, it wasn’t on the list. And having had the infection, I thought she was out. Turns out she is not right now. I’m confused…

He also said the lab still doesn’t know what is growing her urine, except that it is graham negative. Yeah. If the same things grows in the dish as was in her blood, they will think the urine was just contaminated. If something new grows, then the meropenum covers that. He also mentioned that it covered whatever is going on in her right labia.

He then told me he enjoys the complicated cases. He meant well, and it’s obvious he has a bright inquisitive mind that is going to help save lives. I did tell him I wished we were simple because that would mean we were at home getting ready to enjoy snow! (well honestly I might be fussing about the days missed from school, but I will try not to in the future.)

After they left, it was almost time to go watch Cinderella and make a craft. The sign showed a picture of cartoon Disney Cinderella, but they were playing Enchanted. Jesse didn’t really pay attention the movie. Instead she lavished in having the attention of the college kids and making a crown.

By 30 minutes she was ready to come back and call home. She asked to see her room tonight. And she had a breakdown of wanting to go home. With a round of “why doesn’t Sissy have to get shots” and “I’m tired of shots.”

She did make us laugh because Chris was dawdling to go to a shower, and Jesse’s little bossy streak kicked in. And Chris actually got a move on it.

We had to hang up because Mike’s battery was dying. Jesse watched a little TV before saying she was tired. She has complained of pain in her leg, arm, and heel tonight. She has also complained about her back. The leg, arm, and heel are potentially from the GM-CSF shot. They can cause bone pain. Since she feel on her side and the pain is on all different sides, we are thinking its the GM-CSF.

The back pain might be adhesion pain where the nephrostomy tubes were. The nurse mentioned that chemo can sometimes slow down the healing process. I asked him for oxycodone for Jesse so she can sleep. I also got some antibiotic cream to put on her neck to help with the scratches.

Jesse is pretending to be asleep now. Here’s to praying for ANC and less pain tomorrow.