One day at a time sounds like almost a luxury at this point, I am doing my best to not project even as much as a few hours into the future let alone a full day. Two days ago when Georgia took a six hour nap and I was told that she may very well do that until she engrafts (approximately 2-3 weeks from now) I thought I might lose my mind. Yesterday was a much better day, she was happy, playing, gave a few waves and I successfully caught a smile. Ahh, I thought ok, she's back. Today has been a mixed bag.. we got a dose of Synagis which is an RSV immunization and methotrexate which chemo that she gets day 1,3,6 and 11 post transplant. I don't know if it was the additions of these to her normal daily cocktail but something sent her into an itching frenzy, the poor girl looked like she was going to come out of her skin. We gave her benadryl... no change, they gave her another anti histamine, no change. The next suggestion was to give her a different kind of drug that is more of an anti inflammatory... I said how about we stop the morphine because we know that can cause itching? This was met with a well I think we should try adding this other drug... again, I would like to stop the morphine (she is on a really low dose) for now because she is exhausted... this conversation was happening as Georgia was on my lap, crying and unable to sit still because she was itching so much. Ok, we'll give that a try... approximately 10 minutes later she was asleep in my arms. About 30 minutes later our nurse came in and was about to hook up another med, she said the team thinks she should have that different drug just in case... all of a sudden I felt my stomach on fire.. I reiterated that I wanted to wait and see how she was when she woke up, if she was still itchy she wouldn't be sound asleep right now... this was in no way our nurses fault, she is wonderful, and I tried to "not shoot the messenger" .. after she walked out of the room I could feel my heart about to beat our of my chest, I was pissed. All I ask is that you listen to me as Georgia's mom, the person who knows her better than anyone else on this planet. Admittedly I hate giving Georgia any medication, this is something that I will never be comfortable with and really grapple with daily. I don't have a say in about 99% of what she has to take so on this one I wanted everyone to back off she needed some peace then we'll figure the rest of it out. She slept for about two hours and woke up a little cranky, still slightly itchy we have now resumed the morphine drip as an "experiment" (not the words you want associated with your child) so we'll see how it goes.
I don't think anyone is trying to go directly against my wishes, or just wants to do what they want to do.. I think we just come from polar opposite starting places.
You are doing great mom... hang in there... I feel the same way about meds for my kids... Ultimately, yes, you know your daughter but the docs and nurses are only trying to make her more comfortable. The "try it and wait to see" idea sounds like a good plan to me. If she's not having pain, I don't see a need for pain meds and if stopping the pain meds stops the itching, I can see your point. Just be strong and know you are doing the right thing. The right thing is always what you feel is what needs to be done for your child.
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