Day 24 at St Jude

Sorry yesterday went berserk really quickly and by the time I knew it, it was 1am CT the next day.

Jesse and I both were up at 5:30am for some reason. I think her need to go to the bathroom helped her be up. That’s fine with me, at least she is going 🙂 And it motivated me to get up and get laundry done.

The Echo/EKG technician stopped by around 8:30am. Really nice guy and I appreciate him coming to us.

After that the discharge nurse stopped by to teach me how to give Jesse her meropenum (sp?) antibiotic through her CVL. The antibiotic is put in a little pressurized ball. Once hooked to the CVL and the 2 clamps are undone, it infuses over 30 minutes. Jesse hates it. I think she views it as something else tying her down. Can’t say I blame her there.

At 12:15am it was time to head to Nuke Med for the MIBG and bone marrow biopsy. Jesse was really upset when we told her they would be putting her to sleep. With the bone marrow biopsy being painful, we felt this was the best option.

As Jesse slept, I loaded the car. On the second trip I realized I forgot my keys. Luckily I’d left the back hatch unlocked. If only I had known then, what I found out later…

Jesse was finally done around 5. We returned to the room to get her GM-CSF and another dose of antibiotic. Plus we needed to start the ethanol in her lines to sit for 2 hours. Jesse’s ANC was at 1300, not high enough yet to stop the shot.

While the antibiotic finished running, I ran down to return the parent room key. A dad that has been here with his daughter stopped me to talk. Their daughter is 4 year old and fighting a tumor in the muscle in her abdomen for the first time. They have given them a good prognosis. I felt bad that I was in a rush to get everything together when I excused myself. I think he is an extrovert, which being here is probably very hard.

At 6pm, we were finally ready to leave. Got in the car… battery dead. Ah suburban how I miss thee (not the gas mileage part though). Jesse and I returned to the hospital to see if we could get a jump. At almost 7, the security guard could help us. Poor guy had been jumping cars for 2 hours.

He hooked the box up to my car, I turned the key, and horns and lights start going off. This went on for 2 minutes, then stopped. I opened Jesse’s door to buckle her – horns and lights again.

After looking in the manual, we learned that we need to unlock the driver door with the key first because of the security system. I really appreciate that guy staying to make sure that we were able to drive to RMH (Ronald McDonald House).

He told me that I needed to drive the car for 30 minutes to really recharge the battery. Unfortunately I can’t do that. Jesse was done. There was no way I could make her sit in the car for 30 minutes. Plus it was sleeting. He agreed with me. He also told me that he was a former Marine that trained in Virginia. I’m glad he is working here now.

Jesse and I got over to RMH about 7:30pm. I took her up to the room. Then I got a load in. On the next load Jesse wanted to go with me. After that load, we got everything situated in the room. RMH left Jesse a bag of toys for Christmas. She enjoyed looking through them.

At 7:50pm, it was time to take the ethanol out. I still had to give her a dose of meropenum at 11:30pm. This gave me a chance to sort of catch up on my work.

After we were cleaned up, Jesse and I went to check out the rest of RMH. It is a really nice place. I had Jesse on my shoulders going down the stairs. She freaked… don’t think that child likes heights at all.

I am having trouble connecting to Jesse’s site through their internet connection. I did fight with it a little last night, but decided I needed to get some sleep. It was hard to fall asleep. After 3 weeks, I have gotten use to the hum of activity in the hospital.

Right now I am waiting on Recovery to call so I can take her to have her blood drawn and then to clinic for news about the MIBG. I am not really sure I want to hear it. Believe me I am praying for good news for Jesse, but I don’t want to get my expectations to high. Plus I was waiting in clinic when her main oncologist walked out with a new resident or someone and asked him after he turned the corner what he knew about neuroblastoma.