This week and next week Mary has chemo infusions for days a week.
At the start of this, on Monday, she had a lumbar puncture. We opted to spend the night in the hospital to give us one less day of travel. It was a long day and a long night. I never go to the hospital thinking it will be restful, but still. She had a difficult time settling down. Then somehow her port access became dislodged. The nurse came in and tried to flush it and then pulled the bandage back, it looked ok. She felt the next option was to call IV Therapy (aka not my favorite people). After a few minutes with her fidgeting it fell out, or Mary "helped" it fall out. I held her for a few minutes and she feel right to sleep. Then I went to speak with the charge nurse about just leaving it out until morning. But she reminded me that it wasn't heparin locked so it had to go back in tonight. Otherwise the answer would have been yes. I wasn't even thinking about the heparin (maybe because it was 1 in the morning). Heparin is an anti-coagulant and each time before she is de-accessed, they push some in. This keeps clots from forming in the port. We then discussed some options. I told them, charge nurse plus our nurse, if they were comfortable starting ports than I would prefer them to IV Therapy. They were just fine with that. I had to put the numbing cream on her and then it had to sit for about 30 minutes. Remember, though, that I had just gotten her to sleep? Yeah, that. Of course the accessing part didn't go as smoothly as I'd like (it's kind of wiggly, which some people have struggled with). However I was able to get her to sleep afterward.
Then she was awake before 5. I handed her the iPad, at this point exhaustion was taking it's toll. She played for a little while then handed it back. I was, again, able to get her back to sleep. And she stayed asleep this time for a number of hours. I was able to get a little more rest before the doctor and nurses started coming in to do their morning rounds. The plan was for her to get another infusion of chemo then we could go home.
The two weeks prior to the start of this week she had been having diarrhea, gas and general discomfort. Which made for a very red bottom. I wasn't sure if it was something or if it was just a result of the meds she was on. The week of Christmas she was on the steroid, which causes all kinds of issues. I realized two days after she was off it though that I hadn't been giving her pepcid, like I was supposed to, during that week. So that, I know, contributed to some of her problems. While we were at the hospital Monday they tested her for C Diff, as soon as the doctor suggested it I knew it was going to be positive. And I was right. After just a day or so of being on the medication for it she was doing so much better in the bowel department. Although as the week has gone on I'm afraid she might be swinging to the opposite end of the spectrum. Fortunately I've got all kinds of things to help with that.
Because of the C Diff and the steroid for a couple of weeks her sleep was, in a word, awful. Again this week her sleep has improved drastically. With all the coming and going she, and I, I think have reached new levels of exhaustion. I'm so grateful to have a few days of a break. And the reinforcements, my mom, will be coming in tonight.
Once we push through next week we have a couple of weeks of a break, just lab draws once a week.
Here's just a few snap shots from our week.
Like I said, we're exhausted!
The big kids had a day off of school on Wednesday (also Brother's birthday) due to the cold
so they came with us for her appointment.
It's becoming comical the number of pictures I've taken of her sleeping this week
Until a few days ago hot dogs were the flavor of the week. This is right after
her lumbar puncture on Monday when she was finally able to eat.
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