Patient Advocate Please?

Remember this?




Yeah, that nasty rash we finally figured out Chelsea gets with the chemo drug Ara-C. Well one of the residents decided a few days ago that although we've managed to prevent the rash with IV benedryl for the past 5 rounds, the IV was unnecessary and the orders were switched to oral benedryl. Less potent, yes, according to one resident. Well poor kid has red marks down her cheeks that appear to come from her tears. Yes, her tears. Chemo effects your bodily fluids, which is why we are supposed to wear gloves everytime we change her diaper, and often kids can get burns on their bottoms from their own urine. So it makes sense that this is what is happening. It appeared more red this afternoon after she cried when she awoke from her nap.

We're frustrated to say the least that they have changed her orders on something that was working well for so long. Why all of a sudden is the oral benedryl safer or better for her? Have we been harming her by giving her IV benedryl for the past 8 months? Is there something else going on with Chelsea that they're not telling us? Does it have to do with the PICC line vs. her Hickman? These are all questions we'll address tomorrow with the doctors. For now, our hands are tied. The resident said no, and asked the attending on call, who backed her and said no also. We have to wake her up to administer her benedryl. The other option is to skip it and let her rash flourish, which is unfair to her. So as far as waking her up in the middle of the night to give her oral meds, um, yeah, I'm not so happy. You already know her sleeping habits are a mess. I asked the resident what will we do if she won't go back to sleep, let her (the resident) and the nursing staff get her back to sleep? I don't think she likes me very much anymore.

Here's what Chelsea looked like this evening after dinner. Yep that's a little bit of milk shake around her lips and the flaky stuff on her cheeks is the steroid cream they've been (inconsistently) putting on to try and help the redness. It's not working so well. Like I said, I'm confident giving her consistent IV benedryl as we have in the past would take care of the problem. You can see the redness all around her eyes and the red streaks running down her cheeks in the exact spot her tears fall when she cries (which isn't very often). I know the picture is kind of sad, but that's what she looks like right now, and yes, it makes me very sad. We all know she's got an extremely high pain tolerence so while something like this might bother us as it burnt our skin, she doesn't seem to bee too bothered. Don't be fooled, she hasn't slowed down much, in fact a friend of mine visited today and said, "gosh, I can't wait to see Chelsea when she's not so 'run down' from the chemo," as she trotted down the hall pulling the blood pressure machine with me following behind with her IV pole. Haha, run down, yeah right!



Ryan and I went round and round all night with the nurse and the resident with no success. We'll be speaking with our attending tomorrow and a patient advocate. You know me, I'm not afraid to voice my concerns, and believe you me, I'm concerned. Ryan was really getting upset. I almost had to pull him in as he kept going round and round even though it was obvious we weren't getting anywhere!

Well more tomorrow, the nurse is hanging her LAST BAG OF CHEMO right now!!!!! I better get my camera!!! I'm so excited, I'm tickled!!!