We started the day early as Mike and Chris had to leave and fly back home. Jesse stayed awake for a bit after they left. I was able to get her to fall back asleep until 7:20 when we walked over. We were the first to reach the isolation doors. A few minutes later another family joined us, then another.
When you arrive at the isolation doors, one set opens to a holding area. On the wall is a phone where you call your clinic. I called when we arrived. The next family was headed to D Clinic too, so they called. The lady on the other end mistook that mother for me because I heard her explain that she wasn’t me.
The third guy that came in didn’t call because he asked where we were going and was headed to the same place. I joked that I wouldn’t have called twice because the clinician is obviously a lady not to be trifled with.
The isolation room nurse/ registrar appeared before D Clinic clinician did. She was very confused to see us because we weren’t on her list. After a few phone calls she figured out that we were headed to surgery.
We headed upstairs to the operating pre-op room. We had a different nurse than the first time. Thank goodness. The one we had the first time was still there. She’s not very personable. The nurse asked Jesse to change. After 15 minutes Jesse needed to pee. I asked the nurse about going to the bathroom since Jesse was attached to fluids on a pole attached to the bed.
The nurse we met the first time asked me to wait because she was helping another child get ready. Ten minutes later, Jesse couldn’t hold it any longer. I stepped out again to see about her going to the bathroom. The nurse then realized she’d forgotten.
At 8:30am, the urologist arrived. As he went to change they gave Jesse verset to relax her. She really didn’t need it. And I might ask in the future to let her have the choice of wanting it. I had suited up so I could walk with her back to the operating room. The operating room nurses are very friendly. Complete opposite of the pre-op check in nurse. One had Jesse cracking up because she was telling her not to laugh.
The anesthesia nurse gave Jesse propofol, and she was out. They didn’t realize it right away until I told them she always sleeps with her eyes half cracked. I left the room, and in 20 minutes the urologist came out to speak to me.
We stepped into the hall because 3 other families were waiting in the small waiting room. The stents came out really easy. And the test and x-rays of her ureters look good. He did say she’d having some burning urine for a few times.
Jesse was awake by 9:45am. She was really upset that she’d missed the entire procedure. She wanted to see the stents coming out. We tried to explain that she really didn’t. The nurse was super nice, going to find her a package with the stents so she could see what they looked like.
We were scheduled to go to school, but when the nurse called the teacher said she’d come see Jesse in the Medicine Room. Never laid eyes on them. At 11am, Jesse was begging for food. I walked out to see who are nurse was. They hadn’t assigned anyone yet, but said it was ok for me to go get her food.
As Jesse was eating her lunch, another child was brought to isolation. He screamed the entire 2 hours he was in the room. Not sure what his deal was, but I heard the clinician tell him “You shut up!” and “You are not going to talk to me like that.” The women with him couldn’t both stay in the room for some reason. I could see one staying while the other went to get things, but they both had to leave.
At 12:15pm Jesse swallowed the temolozide pills. Then at 1:15pm, the nurse started the irinotecan. Jesse wanted to sit in my lap because the kid screaming that he wanted his mother and to leave him alone was freaking her out.
At 2:15pm, the nurse hooked up her fluids and we left. Only to get a phone call an hour later that they needed to draw labs. The nurse practitioner was the one who called. She had been in the medicine room talking to the family with the screaming child. I don’t understand why she didn’t follow up with our nurse about protocol labs. The nurse too dropped the ball. She made the comment to me that she’d tried to look up the protocol, but to do so required her to log in the long way.
I should know better by now. I need to call the research nurse and get the protocol for this round so I can stay on top of things. In fact I can bet we are going to miss the protocol blood draw she’s supposed to have tonight (the one we did at 11pm in round 3). But with antibody not starting tomorrow until 3pm… I will not come over here to have it drawn at 3am.
I loaded Jesse up, carried her to the isolation door, and called her clinic. The phone rang 15 times before finally someone decided to answer. Ridiculous. And it was another 10 minutes before someone came to get us. If you know you screwed up, have someone at the door waiting for me so this can happen quickly.
When we returned to clinic, I took the opportunity to grab, Jesse’s medicines. I have been asking for things in the pill form… but our main nurse practitioner fails to listen to me. Her Zantac is in the liquid form. I have also asked for zofran in the eclipse balls. I think I am going to have to pitch a fit to get that.
The nurses were quick in getting the labs and getting us out. They apologized about us having to return. I appreciate it, but they aren’t at fault.
Back at Grizzlies, Jesse complained her stomach hurt. And in a few minutes her lunch came roaring up. She feels better now, having eaten some popcorn. Tomorrow the plan is to start chemo at 12. I am pushing for that to happen earlier… maybe around 10am or 11am.