But at least once today (morning) there were people talking about putting the tube back in .. and her nurse stopped her feedings "in case."
There were multiple discussions about her nostrils. Dr. B - sure you can't be convinced to come down here and talk sense to them? I've brought it up a number of times, that ever since Mallorie had her final cleft surgery which closed her nostril, she's been fine ... unless she gets some respiratory illness. Which happens in the winter. Then she looks VERY dramatic, because she never had to learn to breathe though her mouth, like other kids. She continues to breathe through her nose, and if there's any congestion, she just works harder and harder ... causing more swelling inside as she's forcing air through the nostrils faster and with more force. Some doctors get a glazed look and I can tell it's not the right time. But I did want to have a steroid nasal spray set up before she ever got the tube out the second time, because I knew Mallorie planned on breathing through her nose, and I knew it would be better if we planned for it better this time. One attending last weekend said it was a fine idea, and said they would start a steroid spray a few days early, and maybe some Afrin spray could be available, too. And then the tube came out and nothing like that had been done. And no one acted like it was important. Last night, I decided to write it down as a note and left it with the nusre to pass on, and still nothing. And when I relieved Hannah tonight when they asked her to go get me at change of shift because she was working at breathing again, and they'd suctioned, and given an epinephrine breathing treatment, I just put my arm around her, calmed her down ... and said again, she needs something like Afrin. The night nurse laughed, and said she'd just said the same thing. But when she asked the night doctor, she came back and said the doctor was worried about Mal getting addicted to the spray.
Am I the only one here who thinks this is crazy? I'm not asking to put her on a street drug. And in my head, I'm thinking only a few days till the steroid spray kicks in, but even if they didn't think I would agree to it, certainly they could simply write it for 3 days only. I mean, who has all the control here?
It's been a day of struggling pretty much all day with ways to communicate, so people will understand what I see or know about Mallorie. Things they can't know because they don't live with her. Or patterns they can't see from simply stopping in the room for 5 minutes a couple of times a day. Things I can tell them, if they want to listen. Sometimes I just feel like giving up with the effort of restating and restating and disagreeing and asking again. Or tired of finally getting to someone who can understand, but then they go off shift and nothing was passed on. Or the next group simply thinks it's stupid. But obviously, giving up isn't an option. Neither is losing my mind and calling Dr. B at 3:30 am, this time. Plus, the Crazy Ranting Mommy idea didn't work so well 2 years ago, so I don't expect it would have great success this time, either.
So I continue trying. And hope.
And once in awhile a sweet, sleep-deprived fellow (doctor training to be an attending) will stay as long as it takes to really listen, and will hammer out a compromise that shows that her ego isn't as important to her as the whole picture.
Or a neurology resident will listen to a scattered history of what I see going on with Mallorie, and will come up with a compromise that she and I and her neurology team can live with. One that they don't feel will harm Mallorie, that will not cloud the picture if she should get another EEG sometime, and that will allow us to move past this crazy agitated posturing thing that Mal is doing, that ends up with her struggling to breathe. Before putting a tube in, as a matter of fact.
Or another fellow who's been doing an awful long stretch of nights with Mallorie, and worries about the risk of a nose spray to my potentially Afrin-addicted baby, but is able to give a little, anyway.
I've learned that when I'm frightened or sleep-deprived, there's a defensiveness that wants to voice itself in statements like, "Just because she's got disabilities, doesn't mean she isn't very important." I bite my tongue and think about where all this is coming from. Why do I leap to that place so quickly? The communication struggle is not about anyone here plotting against her. They don't treat her differently from "typical" children because of her differences. I really don't believe that in my heart, but that craziness gets stirred up in me at points. And this is what I am learning: it's me, not them. A lot of the communication struggle is a system-thing, and I'm not sure there is a way to get around that there are several people to "convince" if you have a request, and that those people rotate in and out with several other people, and on and on.
But the leap into defensiveness and becoming one of the "Scary Mommies" is something all within me, and something I need to keep a tiny bit in check. I mean, if I don't want to alienate everyone and then REALLY find out what communication problems feel like.
I also have had to speak up sometimes and tell people not to say things that "might" happen as if they really are happening right now. Things they sometimes seem to be pulling right
They decided to try a new med for Mal's high blood pressure, and I was really excited about it, because it has a side effect of causing relaxation. But she is now showing us too-low blood pressures, so I'm pretty sure they are going to take it away (it's a patch). Maybe they can give it to me, instead? :)
Well, it's past midnight and I really need to sleep.