Well I'm going to shoot it to you straight people, Amelie is not doing well. She's had intermittent vomiting the last several weeks. I didn't write about it, not because I wanted to keep it a secret, but because I didn't want to throw it "into the universe" if you will.
However, two nights ago, I was standing over her bed, I went to change her diaper before we all hunkered down for the night, and I noticed she was completely listless. she wouldn't even hold her little head up and had absolutely no movement in her arms. I changed her diaper, re-positioned her all cozy, and sang to her. I thought it was the meds. But then she started vomiting. She vomited five times that night. each time she choked. We had to suction her all night, and, at one point, I noticed the yankAuer tube was red from blood; it was too rough on her tiny throat. I sat up with her all night, watching this poor angel. Every time I tried to lay on the floor and close my eyes, her monitor would go off and she’d be choking. By dawn I thought things had calmed down, then she thew up again and started moaning. a pitiful, strained pipsqueak whimper that was heartbreaking to witness.
Needless to say, that morning was petrifying. She looked...different. Her body was limp, she was struggling to breathe and she sounded like she was drowning in her own secretions. We called in the hospice troops, my mom and sister came over, and we convened with the docs. They wanted us to take her to the ER, which we politely declined. Amelie hates the ER. She hates--with a capitol H--hates the noises, the needles, the invasive intrusions of her body, the feelings of fear, anxiety, you name it. And we know that if we take her in, they'd want to intubate her and we don’t want it. Her comfort is our priority. So we're staying home.
Amelie's lungs are congested. And not in a, "I’m sick with a bad chest cold" congested, but in a, there's fluid in there type of way. Her neurological state is such that she can’t cough it up, she has poor swallowing capabilities, and thus her chest and throat are struggling. Her little chest caves up and down. you can see her diaphragm pushed out, she's trying so hard to breathe. "Just take a deep breath, Amelie" is what we used to say to her when there was a freak-out moment, which was often. "take a deeeeeep breath." and she'd so adorably do it. [We don't know if her brain is causing her body to weaken and break down, hence the aspiration and fever and listlessness. The only way to know that = imaging. Since it's not going to change our course of treatment in any way, she's not going to suffer at the hospital.]
We decided to access Amelie's chest port-a-cath so she can receive meds immediately, had a round table discussion of options that included "the morphine talk". Boss asked what I wanted to happen. I said, "she needs inspiration." He immediately texted Auntie Schimel, who graciously picked up Ayzia from school and brought her over with a quickness. We felt it was necessary to have "the talk" with Ayzia about Amelie going to heaven. We wanted her to know the very real possibility that it could be imminent, and we want Ayzia to know how special she is to Amelie. It, understandably, made her very upset. She fell asleep crying next to Amelie in her bed. That child slept for over 2 hours! When she awoke, Braveryboy came home and had breathed light and life back into this house. They played, we ordered sushi takeout, I may have had chocolate and wine, and we actually had a moment of normal family time around the table. Ayzia, always the big sister, helped Brave with his numbers, and read to him and Amelie on the bed. Brave was a captive audience--he loves Ayzia (i mean, we ALL love Ayzia!) When they drove away I was smiling and felt hopeful. Then I turned around, took one look at Amelie suffering in her bed, quite literally fighting for her life, and just lost it. Another nurse (the fifth. yes, fifth nurse that day) came at 10:30pm to give me the IV meds/supplies. I gave her more powerful anti-nausea and drying-up-secretions meds. Take a deep breath, Amelie, take a deep breath.
THANK GOD we had a night nurse last night. I mean, really. and one I adore and trust completely. I got 6 hours of sleep, and when I woke up at 6am I felt like a new human. But then my conscience came to and my heart sank again. Amelie just looked miserable. Her little brown eyes were bloodshot and foggy. Her face flushed with a fever. and this tiny chest laboriously fighting for breath. The night was rough. Abby saved her life by keeping her breathing. Take a deep breath, Amelie, take a deep breath. Abby stood or sat by her bedside her entire 11-hour shift. Amelie needed albuterol treatments every 2 hours, pain meds, Tylenol, and was moaning. But, NO VOMITING.
I woke Boss up at 630am, we cried, prayed, held each other. we started to fall back asleep, the kind of sleep that feels so good you can taste it. Then the pulse-ox alarm went off. I gave him a job (b/c the man needs a task. he's going crazy here. he's been feeling this coming for two weeks and has been in a deep depression. it hasn't been easy. he isolates himself. he is moody, unmotivated, and the only time I see him smile is with Bravery. He readily admits he’s losing it, and asks me to hold him and pray with him. It hurts my heart and, I admit, annoys the shit out of me. but I feel grateful he’s turning to me during this time, and not to the bottle or something like that, as so many “tough men” do in these circumstances). His job today=get her to cough. Boss has always been INCREDIBLE at getting Amelie outside of her comfort zone. He, more than anyone, has always been the one to motivate Amelie. and by golly, by 9am, she coughed three times.
So far today, no vomiting! the meds are workin' and Ameliegirl is resting peacefully. We have her on THC and oxycodone. I’m not a fan of narcotics. or their nasty side effects. But it’s working to help her breathe. And she’s no longer moaning.
I just pray this progress, albeit it minimal, will continue. I want tonight to be uneventful.
Right now, I’m softly whispering to her, take a deep breath, Amelie. take a deep breath.
Will update more tomorrow
still having sleepovers!!