The last few days I have noticed that Jesse is swelling again in her right hip/ groin area. I don’t know what these means exactly, but I worry that it’s not good.
Mike and I also have had several discussions of being really tired of the lack of communication we are receiving from the doctor and nurse practitioner. Mike told me that he planned to talk with social work when he came to get this sorted out. I know that he is trying to help me because I have a lot on my plate taking care of Jesse. But without intentionally meaning to, it made me feel like I am failing Jesse.
And this morning when I saw a face that I trust and haven’t seen in awhile, I told her that I was tired of not getting answers, the swelling, the feeling that we needed a back up plan, our tiredness of not being home, and how we feel like the biggest inconvenience being in isolation. All of this was said in ear shot of the clinician.
I don’t know what she said to our clinic nurse, but her attitude towards us was very different (in a positive way). She told me that our main oncologist has a one track mind on top of a stomach you can set your watch by. And when he is thinking about a new patient, we are just a blip on the radar. This is frustrating to me.
If we had not received the level of care and attention we did at CHKD, I would not know what I thankfully do know. And here if I didn’t know it, we really would be swept under the rug.
She also told me that he was not here today, but would be back tomorrow. So much for having him look at the swelling today.
After an hour and half, the labs came back. Jesse’s platelets were at 28, ANC at 0, and red blood at 8.8. The nurse practitioner decided to order Jesse some platelets for the weekend after she finished talking in baby talk to us. Literally she came in and asked me if Jesse went “Peesie-Weesie” and “Poppies-Whoops” yesterday and the day before. Luckily I guess the look I gave her put a stop to the baby talk real quick. Really who talks to people like that?
Once I got her to talk to me like an adult, we discussed letting Jesse do the recovery of Round 6 at home. The nurse practitioner sounded like this might be a real possibility. We would have 4 days to get Jesse home before her ANC would tank. And then we’d have to be really careful to keep her from getting an infection. But I think she’d recover better at home.
When I talked with Mike, he mentioned Jesse and I flying home and him driving. No way. I don’t want her on a plane. Google maps says that it’s 12 hours from here to home. It might take us 16 hours, but we’d be home.
From the way she talked, Jesse would get tanked up for the weekend. And she agreed when I asked if Jesse was getting some red blood too. At 12, I walked out to take Jesse to the bathroom. The clinician told me they were still waiting on the Medicine Room to be ready.
At 1pm, I walked out to take Jesse to the bathroom again. The clinician said they were still waiting. At 2pm, the door flung open. The clinician said, “I thought you guys were gone! I went to get something to eat, and they are ready for you at the Medicine Room.” Sigh.
In the Medicine Room, the nurse had a nursing student with her. So she was busy explaining everything to her. When she mentioned Jesse was getting platelets and not red blood, I looked at her quizzically. The nurse told me she would call the nurse practitioner and double check. Turns out that with her red blood being at 8.8, they aren’t going to give her red blood. The platelets started at 2:30pm. Finally by 4pm, we walked out the door.
Tonight they are having prom for the high schoolers. Jesse and I went over to watch the limo arrive, but Jesse couldn’t make it to wait. At least we got her some vitamin D.
Back at the room, I gave her the two shots she needs. She did eat a banana for dinner. Getting her to eat is getting difficult. She has 3 loose teeth combined with not liking the food here isn’t making it easy. Plus the antibiotic is making her have to go to the bathroom more, and she wants to control it. This is leading to some pain because she goes and forces herself to stop.
I am getting really frustrated with her lack of not eating and trying to hard to control her bowel movements.
Soosan – I looked back through your posts and noticed not many comments recently. That doesn’t mean people aren’t reading, I don’t think. I know I still am, except for a couple days when I was on the road. But you are and Jesse and the rest of your family are often in my thoughts. I think of you when I am having a ‘bad day” and think how bad can my day possibly be in comparison to what you are juggling and how disrupted your life is right now. I hope you and Jesse get to go home for a bit. ARe there any massage therapists there? I keep thinking how good it would feel for you to get a good massage and relax some of your muscles that just must be tied in KNOTS from the tension. You find one – I’ll get you a session!
Read all your posts. Keep them coming. I think n pray for yall everyday. It must be so hard on you being so far from home n family. The not knowing. Know you are doing the best you can for Jesse. You are a great Mom with alot on your plate. Try to keep your chin up n stay positive. Hopefully yall will be home soon:-)