Jesse was up at 7:30am on her own even with us waking her every 2 hours last night to pee. The night nurse was awesome. She suggested a portable toilet next to the bed to make life easier for Jesse and I. She also let me sleep through some of the wake up times. On the ones were she needed an extra hand she woke me up, which I am totally fine with. Plus she treated me like a partner in Jesse’s care and I didn’t feel judged by her at all.
At 5:30am, I woke up and saw they needed a urine analysis for Jesse. I got that for them, and dosed back off. The urine analysis has to be run 4 hours before Jesse’s chemo starts. And I didn’t want anything to delay the start of chemo.
When Jesse woke at 7:30am, she wanted a banana and Coco Puffs. She had asked for a banana at 9pm here, but the cafeteria closes at 7pm. Not exactly the most convenient time for kids who have been drugged or doing treatment all day.
After she ate, the nurse practitioner stopped by. She started telling Jesse how she needs to wipe. I stopped her short telling that it was a waste of time right now because Jesse is on ativan. Last night Jesse argued with me that the freckle on the palm of her hand was dirt for ten minutes.
The nurse practitioner still talked about Jesse getting out on Sunday night, returning for appointments on Monday, getting the transfusion on Tuesday, and leaving. I asked her about an appointment to have Jesse’s labs checked. She looked at me clueless. Really? Her counts are lower starting this time than last time. Her counts need to be checked on Monday. If she needs blood or platelets before we leave on Tuesday, this needs to be done for her protection.
I feel that since I am tired of playing their game, I have been written off and so has what is best for Jesse. The appointment with clinic on Monday should be schedule already no matter what. I have spent so much time here fighting for things to happen to make sure Jesse is kept as safe as possible or to help her.
The main oncologist thinks her radiation should occur here because “this is the best place.” After the way we keep getting treated, I strongly disagree this is the best place. They have an extremely skilled marketing and fundraising department, who if hired by anyone running for President could get that person elected with a ton of money left over.
The nurse practitioner left, and at 9:30 the nurse came in to start etopophus. After two hours, she started the ifosphomide, and she started the diluadid pump. This has, of course, made Jesse feel more loopy.
The research nurse stopped in to give me a copy of the fax she sent to our home hospital. So happy that CHKD is willing to draw the research labs giving Jesse to come home. This place feels more and more imprisoning the longer we are here.
Before the antibody began a volunteer stopped by. I keep telling myself “They mean well, they mean well.” But I can’t stand the high pitched voice that some talk to Jesse in. She played with Jesse for awhile, and I got the impression she wanted me to talk to her. But I was not really interested in having a conversation with her.
About 2:30, half way through the antibody, Jesse complained that she could not breathe and her throat itched. I am wondering if the milk I let her have for breakfast played a part in the trouble. Of course with this happening, a flurry of activity followed. I asked the nurse practitioner about get her adarax. This is a drug Jesse has had in the past when her throat has itched even while on the diluadid. For some reason this time she wanted to give her claritin. I asked why the change in medicine. Of course no response. Then when I asked again, I was given the response that it could make her drowsier. My thinking is why are we worrying about that now at Round 6? Should we have worried about that from round 1?
The social worker was here to witness what happened. She had stopped in to check on us. I told her I was trying to contact the transplant coordinator for a time of infusion on Tuesday. She had been making calls for me to see if she could find out a time. But when Jesse started having trouble that all got put on hold.
From the look on Jesse’s face, the diluadid was doing a great job of trying to knock her out. And it was the same look she had while the volunteer was here saying out loud, “She needs a nap” and Jesse saying, “No I don’t.” And by the time 3pm rolled around, Jesse was claiming not to know who I was, who she was, or where she was. The nurse put heart and respiratory leads on her, plus the pulse ox to watch her oxygen.
Before they gave her the claritin, a respiratory nurse came to start the oxygen Jesse asked for. Jesse tried to refuse taking the claritin in favor of just having the oxygen, but I told her she had to take it. At 3:30, we started working on trying to get Jesse to pee. But with the diluadid, she does feel the need to go, however she is retaining it.
At 4:15, we were interrupted on the toilet by infectious disease. They want to keep Jesse on the nitrofurnation because it might be helping her. We won’t really know for quite some time. As for the bug, we don’t know what that is either yet. The infectious disease fellow had to have the lab “rescue” (her words… guessing that means it was getting ready to be destroyed) the urine culture. The lab doesn’t normally test unless the colonies are over 10,000. But since Jesse keeps recurring… they are going to test for what it is and what it is resistant to.
The infectious disease doctor told me to not expect Jesse to be out of isolation for quite sometime. I figured as much… and really wish they had not teased her Monday with that taste of freedom.
As he was looking at Jesse, he really became concerned. He asked if a CBC (blood chemistry looking at ANC, red blood, platelets, and more) has been ordered for Jesse in the morning. The nurse looked in the computer telling him no one had not been. He left the room saying he would mention to the nurse practitioner she needed one. I like the infectious disease doctor. From him, I get the same feeling I do about our home oncologist. Both want what is best for Jesse and are genuinely concerned about her care.
Once they left, I tired to get Jesse to go again. The nurse even brought hot water for her to put her hand in trying to trick her to pee. At 5pm, Jesse fell asleep. Around 6, I sat her on the portable toilet. Thankfully she went. As she was going, the nurse was trying to make sure the nurse practitioner ordered Jesse’s CBC and cut the basal rate. Surprisingly she was still here and did do both. I was really concerned that she had not ordered the CBC because we talked about it at 4:15pm… and it was 5:55 before she ordered it.
With all the trouble getting her to go, the nurse practitioner agreed to move her to fentynol. And agreed to cut the basal rate overnight. We are going to see how Jesse’s plain goes. Right now getting her to pee is a big deal. Fentynol doesn’t cause as great a urinary retention. I am a little perplexed though… what could have caused diluadid to snow Jesse so much today?
We only boosted her once before starting the antibody. She only hit the button one time because her left leg was hurting. And she refused that for as long as possible because she hates the feeling diluadid gives her.
About 6:45pm the attending doctor came in. I am really impressed that he stayed so long to make sure he saw everyone. He agreed about having the CBC done, and even suggested one for on Saturday morning. He had no trouble letting Jesse be released Sunday night for appointments on Monday and Tuesday. And I told him since she was never going to get out of isolation here, I didn’t want her to stay. He totally agreed with that reasoning.
Tonight we have the same awesome nurse, who is going to draw Jesse’s labs at 12. If she needs blood, she’ll get it on night shift. And since her heart rate is now hanging out in the 160s, I will be surprised if she doesn’t. And tomorrow we have the another awesome nurse, who has been with Jesse for the last 2 days.