Day 47 at St Jude

Jesse and I went to D clinic to wait for her appointment with the nurse practitioner who would be doing the bone marrow biopsy. She came in and I brought up the lump I noticed where Jesse’s left nephrostomy tube had been. I noticed it last night when Jesse complained of pain last night in her back.

She left to get the doctor. Poor doctor was the guy I told I was frustrated on the day that Jesse threw up. He is definitely a patience soul because he was super nice. They looked at her back and decided to contact the radiology nurse.

Jesse and I left them to head for her MIBG sedation appointment. On the way we ran into the radiology nurse. I told her what was happening. And she decided to call the nephrologist and talk with him and D clinic.

We didn’t have to wait long for sedation to be ready to see Jesse. The nurse was the same one who Jesse has seen. And because she was comfortable with her, Jesse talked a blue streak. It was so nice to see her comfortable with this.

At 10, Jesse was taken to the MIBG machine. She tried to climb on the table, but wasn’t tall enough without help. The nurse lifted her on the table and got Jesse settled. They commented on her heart rate being high.

They went ahead and used the propofol to put Jesse to sleep, and I left the room to wait for her to wake up. As Jesse was going to sleep, she asked me again if Melinda would be here when she woke up. I told her that we were crossing our fingers.

Melinda had planned to arrive last night, but with her flight going through Atlanta and mechanical trouble… let’s just say after several hours of delays the flight was canceled. To get another flight here, Melinda had to point out to the ticket person that it was mechanical trouble and therefore they needed to get her another flight.

The second flight left this morning and arrived in Memphis around 11. Mike had given her the name and number of the driver he uses when traveling to St Jude. The driver dropped her off at a little before 12.

Shortly after that, the nurse called to say Jesse was stirring. She was really cool in letting Melinda come back with me. I think that had other patients been in there, she wouldn’t have let us.

Jesse sat right up when she heard Melinda’s voice, and by 12:30, we were back at RMH. I gave Jesse some oxycodone, and we went downstairs to make crispy Parmesan edmame. Yum 🙂

Jesse had two helpings of the edmame and peas. Then we came upstairs to give her the meropenem and change her dressing. Jesse was still talking about eating, but I made her wait for 30 minutes to let the zofran get into her system.

She did an awesome job of holding still when we changed her tape and clave. But unfortunately by 5:30pm, she was complaining that her back was burning. The nurse practitioner had called me to say they felt Jesse had a subcutaneous infection on that left back side. They feel the meropenem will cover the infection, but Infectious Disease will see her in clinic on Monday.

We debated taking Jesse to the medicine room, but decided to hold off to see if the next dose of oxycodone would help. We were able to get her to pinpoint where the burning feeling was. It turns out the pain was more in her biopsy sites. Since the bandages had fallen off, I opted to put some camoseptin and new bandages on the sites.

Melinda had the brilliant idea to make up some dressing and clave change kits. It really frustrates me that as a parent with previous training on doing sterile dressing changes, I can’t have the pre-made kits the nurses get. I was able to get them to give me the parts, but I have to configure the layout to keep everything as sterile as possible.

After giving Jesse her next dose of oxycodone, she dosed off. I am not sure how this biopsy was done, but I don’t remember Jesse hurting this much before. She did mention a little while ago that she was taking the best nap ever. And I do hope this sleep makes her feel better.

We are waiting to do the meropenem and other medicines at 10pm.