Still breathing through a tube in her throat, on a vent. Not needing the vent to do the breaths - she is doing her own breathing - but still getting oxygen and still has the tube, because Mallorie is not back to herself. She is not aware of me, not responding as if we are messing with her, and doesn't seem to have a gag reflex yet. Tomorrow she will get an MRI to check her brain.
I didn't get to sleep till after 1 am last night, so I started out tired and low, and learned when I came back to her room that her IV that I loved so much (in her arm) was out, and they had stopped her milk because her belly was distended. There was a new IV in her scalp, courtesy of Tony who, like Ida, isn't a believer in cutting hair. Crazy guy. But because of this, the plan is still on to have her get that PIC line (an IV that starts somewhere like an arm or leg, but the end is closer to the heart) on Tuesday, after all. I had been hoping that we'd get closer to Tuesday and they would be happy with the arm IV and decide she didn't need the other IV.
Rounds had already been done, and I actually, I hoped (and prayed) that the attending doctor I liked so much yesterday, would not come around, after all. Because I didn't want to hear any negative thoughts. She had said something in rounds yesterday about wanting Mallorie to be at her best when the tube comes out, to give her her best shot of being successful coming off the vent. And mumbled something about, "because then we'd have to have a conversation that mom and I don't want to have." Whatever that meant. So I was wanting to avoid any conversations, in case one might be the one "we" don't to have. Around 5 pm, she did come by, even though it almost sounds like she wasn't Mallorie's attending today? She is very nice, and told me to give Mallorie more time to come around, that she might just be sick still. I liked the sound of those words. So we will wait.
The doctor who I think was Mallorie's attending today came by and introduced herself, and we talked about Mallorie. Who she is, who I think she is (because apparently, word around here is that I don't realize she has any "issues"), what I think she has that caused her issues, etc. I don't remember exactly what I said, but I felt as I was talking that I had a chance to speak for her, to let someone know that I believe Mallorie's unique body is not the result of some mistake. At that statement, the doctor said, "Well, something went wrong." I elaborated that still I believe she was made exactly as she was meant to be, and was an intentional creation. When I finished, she said she understood, and that we were on the same page (about Mallorie's value in our lives, and how there are people with disabilities who are simply meant to be here, and are not mistakes). And that she was very glad to have had the chance to meet me, herself. You know, because of all the impression they apparently have about me thinking Mallorie's a "normal child."
I wonder if that is in her NICU stuff, or just the day to day report handed over between doctor groups, about me being the crazy mom in denial? Because I do remember being told the transport team printed out her entire record and read it on the way to come get her.
Well, I called my friend Katha, to get some encouragement, and hear some words about God. And took a shower, and now I'm going to give Mallorie a bath and get some sleep. Cynthia, a respiratory therapist, came by because she doesn't have Mallorie tonight, but wanted to check on her. She listened to my report of the day, said, "All in good time," and told me she would pray for her. Those are the kinds of words I needed to hear today. And I'm going to bow out of the late night dinner parties that happen in the waiting room, stick some ear plugs in my ears, and try to sleep enough to make up tonight.
The Trisomy 18 Connection
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