I was with her yesterday. She was working harder than i've seen her try to breathe in a very long time. I'm trying to get some relief, resolution and was finding none. After hours of watching her work so hard I was just at my wits end. I would talk to the nurses and get as far as they could easily give me. I would talk to her respiratory therapist and get as far as they could give me. And they would walk off satisfied that they had adequately addressed my concern. And then I would look down at her and she'd still be working so hard, breathing so fast with such a small volume, and I'd just cry. I was standing there at her bedside, actually fearing that if I didn't get something for her that this could be the beginning of her end. I was that scared.
I finally started flipping through numbers in my phone and calling anybody who could help me. I called the boss of discharge planning at Kaiser (on her cell at home) to see if she could tell me the name of the Kaiser doctor assigned to Sara. That assignment was one of the reason that they held her discharge a day, so I know they have it somewhere, but the staff here can't find it. LL didn't have it at home, and then I felt silly to have called her. I had no concept of time at that point. She'd call me Tuesday.
So I went back to wiping her down, chasing itches, and making sure her cat was up against her leg. Oh, yeah, I took the cat there yesterday. It thrilled Sara and made the cat pretty happy too. He still wouldn't willingly come out of the cat carrier, but he did hang a paw over her leg and sit there and purr. He even tucked his nose up under his paw and the edge of her leg and napped.
Even with that calming influence on her, she was still taking 40+ breaths a minute with a very shallow volume (mid 200s). I finallly, in desparation, called the local Kaiser hospital trying to track down a doctor. Hey, no joy. They thought I was just some nut calling from a nursing home trying to spoof them that my 19 year old daughter was in respiratory distress. So, I called up to the ICU in Sacramento. I at least know the staff up there and they would tell me if I was truly being a nut. I talked to one of the nurses I trust most and she gave me some advice, but also said that I needed to find a doctor there to lay eyes on her.
After getting off the phone the RT came in and I asked if there was anything we could do to get her volume up - suction, change the HME, anything... She said they could give her albuterol and atrovent. I told her that she's supposed to be getting that every 4 hours, so when was the last time she got it? She hadn't at all since she left Kaiser, we found out. My own head went a little numb. Ok, so they gave her a Duoneb treatment to try and open her up a bit. Sara indicated that it helped a bit. She was still laboring with still lower than usual volumes (low 300s). So I asked the RT what she had ordered for breaking up stuff in her lungs - Rubinol. (I thought that was to keep down her oral secretions...I have to check...) And for combating the pneumonia - IV antibiotics. The culture is not back yet, so we don't know what specifically we are combatting.
Ok...is there ANYTHING else we can do for her to ease her breathing, get her volume up, etc. Position? More IV fluids (her urine is turning kind of orange...)? Manual therapy?
We changed her position anyway, it was time. Talked to the nurse about fluids - she said No. Manual therapy - no orders - so I did it myself. We discussed what they had available that they could order and the RT will talk to the doctor (dr who?)
The only other thing was to put her on a rate. Sara immediately started indicating No. She does not want to have the vent to all the work for her. She doesn't want to be dependent - she wants off the vent. So we talked about it with the RT. The doctor has orders in to put her on A/C if she needs it. The RT told Sara that she wanted to give her a rest and get the volumes back up, so she could put her on a rate at night and then SPON (spontaneous) during the day - just while she gets over the pneumonia. Sara still said No. So I trumped her. I asked her if she wanted to get better or was she wanting to give up. She indicated to get better. So I told her that I would trump her secondary desire in the interest of that primary goal.
The RT put her on A/C and within a few minutes she was more at ease and resting. I asked her if that felt like it made a big difference and she said Yes. I told her that THIS was how she was SUPPOSED to breathe and if she was breathing like before that it is a problem that needs to be addressed. I know she wants off the ventilator. I know she hates suctioning. But she also knows that they are both a fact of life right now and we need to use the tools for her as best we can.
I stayed for a couple of more hours, just so ease myself by then. She and I were holding hands and watching "A Raisin in the Sun". Her cat happily against her leg, napping like cats do. By the time I left I was mentally baked. I am sure I could go to school and become a critical care nurse - but taking care of my own kid would be the worst. Every time I looked at her face I would see my baby girl - just like I do now. I just want to be her Mom, and take care of her like a Mom can. I just want to bring her home and protect her like I should.
I called last night and all they would tell me is that her vitals were stable. I asked more (last pulse ox, was she sleeping), but the person I spoke to couldn't be bothered with checking her...
I'm back at work today (Finally!!)
Daniel will be up with Sara today. He's going to call me when he gets there so I can get some info on how she is really doing this morning.
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