Sunday, June 21, 2009

So Sick

When I was told that Amanda had Leukemia, the first words out of my mouth were, "How sick will she get?" What we've witnessed the last 48 hours are exactly what I feared most. She has been so sick that the words miserable don't seem to touch it. As a parent it has been almost unbearable to watch what she has to go through. Her head is "exploding with pain" as she puts it. She just screams. The pain medicine makes her throw up and she didn't keep much of anything down all day yesterday. I finally asked Scott to give her a priesthood blessing before I had my own mental breakdown in front of her. I knew it wouldn't magically heal her, but I know that my clarity of thought has improved since and I've had much better ideas come to my mind of how to provide more comfort to her. I called the on-call doctor to figure out a better medication regiment. I was given the weekend on call delema of getting anything done, and that she'd just call in some different oral nausea meds. I knew Amanda wouldn't be able to keep it down and I argued that we'd be up all night with her screaming in pain. The doctor was reluctant to prescribe anything but oral medication and noted that cancer kids just have more intense symptoms, that's the way it is. This was not the right answer to tell me. I demanded her prescription be IV push meds and told her that I've maintained my own PICC line for 5 months and don't need Amanda hospitalized in order to get it. The doctor finally agreed to home care, but said they'd hospitalize if her condition doesn't improve by Monday. Home health was very fast, unlike her prediction, and the pharmacist spent an extensive amount of time with me discussing everything I needed to do. FYI -I'll take an on-call pharmacist any day over an on-call nurse practitioner. They always seem to be so helpful and patient at odd hours.

As I thought, the IV meds are helping. She still is in a lot of pain before the next dose is due, she's still nauseated, and a fever comes and goes. But, she is far more comfortable now. I've also figured out better ways to get her to calm down. Much of her pain is intensified by her crying. I've mostly made up silly stories about going to the beach with the people she is very attached to. We are going to owe her one giant vacation there when this is all over with!

It's ironic how some of the hard trials in our life prepare us for something else. I never expected that learning how to manage my own home hospital care would help prevent Amanda from the trauma of being hospitalized. That, and I'm fortunate to have a sister-in-law that is an excellent pediatric nurse whose son had a bone marrow transplant. So, her trials have provided me with hands on experience and advice that I don't get from clinic doctors. She also knows exactly what we can manage at home as well.

As of this morning, I can say Amanda's condition is improving slightly. Hopefully I haven't spoken too soon. Doing better means she actually left her room and kept down some waffles. She is also sleeping a lot, which gives me a break. She's very moody and emotional, which is proving to be exhausting for all of us here. She's such an emotionally sensitive kid. But she'll get through this. I know she will get better. She's too strong willed.

1 comment:

  1. This entry was difficult to read, so I can't even imagine how difficult the last few days have been. Good for you for following your god-given motherly instinct! You've been dealing with those IV's long enough to know what your doing. I pray it works and she is able to start feeling better. Love you.