Today Jesse and I went over to clinic at 9 am for labs. Until her ANC reaches 500, we have to be seen every day. Yipee 🙁
The clinic nurse and clinician worked to get Jesse’s vitals taken quickly so that we could get out of the building before too long. I appreciate their efforts, but given Jesse’s platelet count yesterday, I didn’t think that was going to happen.
After an hour, the nurse practitioner came in. “Is she peeing and poopying?” Asked in a high pitch voice with the style of baby talk. Really what is this woman’s deal? I looked at her in disgust, and told her that yes Jesse is going to the bathroom. She talked about Jesse starting chemo for round 6 on Tuesday. I told her that I didn’t think that would be possible because of what the main oncologist told us. Either he didn’t talk with her about Jesse or he told her and she failed to listen.
She then said she talk to the main oncologist. Then she said we’d be back on Monday. I told her no we have to come back every day that Jesse’s ANC is below 500. It then dawned on her she is supposed to exam Jesse every day that her ANC is below 500. I am so tired of this woman. She is beyond incompetent in my opinion. But I don’t know how to tactfully ask for another nurse practitioner without worrying about diminishing Jesse’s level of care or having to deal with cronyism.
While she was examining Jesse, she again asked in the baby talk if Jesse was going to the bathroom. She then commented on how well Jesse speaks. That she sounds like a little adult. I should have taken the opportunity then to say, “Yes, because I have never spoke in baby talk to her. I hated it as a child. I hate it as an adult.” But I didn’t. I really want to point out how unprofessional it makes her sound. Yes I can’t stand her.
As she was examining Jesse, the clinic nurse stuck her head in the door. Jesse’s platelets are at 22. The nurse practitioner started to flake on giving her platelets. So I made the decision for her. I told her needed to go ahead and have them done today. Might as well get it done today because there are probably more people in the lab to get the platelets ready.
As for her other counts: red blood 9.1, ANC 100, white blood cell 0.3, and weight 14.4kg.
She left to get the order in for platelets, get another doctor to come examine her (not sure why), and check about the plans for round 6. Do you think she returned to let me know what the plans are? I luckily caught the clinic nurse just after she overheard the nurse practitioner and our main doctor decide to move round 6 back a week. Wow so glad they could let me know. Thanks guys. Just more proof that I am viewed by them as someone who shouldn’t be allowed to have kids.
We still do not know if round 6 will happen. Next week will be trying to see the urologist and watch Jesse’s groin to see what happens when her ANC returns. We might even have scans. At this point, I don’t really know. And with the level of communication I am getting, I might find out the day of if round 6 will happen or not.
About 11:10, we were moved from the clinic to the medicine room for the platelet transfusion. We sat for 30 minutes before we saw anyone to start the premeds. Fortunately they are giving Jesse a whole bag of platelets. She does really need it in my opinion because she lost a tooth in clinic this morning. It took awhile for her to stop bleeding.
At 2pm, the platelets finished transfusion. We sat listening to the machine beep for ten minutes before a nurse rushed in. She said that everything happened at once. She unhooked Jesse from the IV pump. Instead of walking us out, she went to get someone else to do it. I don’t get it. She was already dressed in the gown. All she had to do was walk us around the corner, and out the door. Instead we had to wait another 5 minutes. This delayed me giving Jesse her dose of cefepime by 30 minutes in total.
We returned to the Grizzlies House. I hooked Jesse to her cefepime. For some reason it is taking it an hour to infuse versus the 30 minutes on the instructions. Once that finished, I changed Jesse’s tape and claves. Then I put the ethanol/ placebo in to set for 2 hours. And Jesse took dose 3 of the day of nitrofurnation.
About 5pm, the annoying automated lady called to let us know Jesse has an appointment in the Medicine Room Sunday morning at 9am. I looked online to see when her Saturday appointment was scheduled for. Then I looked at Monday. I am so hot.
I have asked this place for Monday at 9am for 30 minutes to be my time. I have a staff meeting at that time. I have only asked them for this one time. That horrid nurse practitioner scheduled Jesse’s Monday appointment with her main oncologist at 9am. It was in the system, and she just scheduled over it. And what really burns me up. Do you actually think we will see them at 9am? Nope it’ll be at 9:30 or 10. I wish there was some way I could schedule her for things over top of specific times that she has asked for. See how she likes it. I have told her repeatedly that I am working and have asked for that time for a reason.
And because of her treatment of us today, I am going to push harder to get back to Virginia and under our home oncologist. I can’t take much more of her rudeness without blowing a gasket and getting us permanently banned from St Jude. This would not be good for Jesse in the long run. We will have to return for scans, but the less I have to deal with that “person,” the better.
Yes I know Jesse’s care is important. But there is no reason her Monday appointment couldn’t have been scheduled for 10am. For the last 3 weeks, they have been scheduled for 10:30am on Mondays. This is convenient for me. And it is more convenient for Jesse because she can sleep longer. The child is not a morning person. I talked to Mike. He suggested that I tell them on Monday from 9 to 9:30am, they may not come talk to me. Sounds like a plan.
Jesse has another dose of nitrofurnation at 8pm, then cefepime at 10.