OK, last night was not bad. In fact, it was awesome! I got 4 hours of sleep! I feel like a friggin million bucks right now! (although that just could be the 5 cups of organic fair trade totally overpriced could just be plain ole grass and i wouldn't know jasmine green tea I had for breakfast talkin'). She slept almost the ENTIRE night, save for being awake at 4am, then again at 6am, both times fell promptly asleep. Amelie seemed comfortable, she snored and sighed, and only had two seizures (from what I could visibly see, anyway). I think Lulu might hate me doing night shifts b/c I kiss her cheeks so much I'm annoying even myself. I simply cannot stop. I have to force myself to stop kissing and cuddling her to the point that this little bedridden girl has to grumble and growl to get her crazy mother away from her!
Someone asked what the night shifts look like, in terms of what do we have to do...first and foremost, we have to suction her. Amelie has a tiny mouth, tiny little nasal passages and does not have enough strength or motor capability to swallow like a healthy child, so those secretions build up quickly and need to be taken care of. We give her 1-2 nebulizer treatments with saline or albuterol to help loosen all the muck.
Second is seizure control. She's having these silent, creepy looking seizures that don't normally last very long but, if they come in clusters, need to be given Versed (a drug) and CBD immediately. She's on pulse/oxygen monitoring machine, which beeps (more like screams at me electronically) if her heart rate jumps up, which it does when she's seizing. Her eyes get crazy big and there's this strange jumping of her pupils, like a glitch in the Matrix happening. You know too when she's done seizing b/c her eyes return to normal and she usually lets out this big siiiggghhhh. it's such a great sound! I feel like I hold my breath too sometimes, and that sigh lets me know I can breathe again.
Anyways, we also have to change her position frequently, change her diaper, change her feeding from food to water only, talk to her or hold her soft little hand if she's awake, and check the oxygen levels. Last night she rocked it. Although I did notice she seemed like she wanted to vomit, but never did, so there's that....
I woke up to the sound of the doorbell. It was Dr Bower, the Hospice MD, the kindest, most tenderhearted doc I've ever encountered, and the rest of the Hospice team. YEP, totally forgot about that 9am meeting we had. WHOOPS. I was in my husband's giant tshirt, no bra, embarrassingly plaid, oversized pajama pants, with my hair in what could be loosely described as some sort of pony tail protruding off the side of my head, and breath that could kill a small village. I looked AMAZING. (she kindly let me get dressed, I think for all our benefit!) anyway, the meeting lasted 3 hours wherein we addressed pretty much everything, including spiritual warfare (more on that later).
What we're concerned about right now is this: Amelie having such an intense seizure that she dies from it. There it is. I said the d word. And there's really nothing we can do about it if that does happen. So now, I'm even more terrified to leave the house, fretting that if I sneak off to yoga or the grocery store, that my baby girl takes her last breaths without me. I have no idea how to live in that modality. and neither does Hubbs. Losing her is not my greatest fear, nor is her suffering, b/c I know I can make her comfortable....it's her being ALONE in that moment. Fact is, no one is in control of that, not any of us. It's in God's hands and I need to accept it, somehow. I'm not there yet (Miracle seeker, remember?) but I'm doing my best to navigate this. Thank GOD the Hubbs and I are a united front right now. It hasn't always been that way. This is basically hell for a marriage, and that has been the hardest thing for me to cope with this year, my marriage when it feels like it's crumbling. But right now, there's love, acceptance, kindness, grace, affection and support. (Talk to me next week, it could be different LOL)
He's on a motorcycle ride. the man needs freedom outside of this. We both do. I went to Yoga Tribe Friday and it was healing--where my crew of bitches gets together, do yoga, meditate, have mindfulness. This time we skipped the yoga, drank and ate pizza by the fire (I'm still callin it Yoga Tribe to pretend I was doing something moderately healthy). We need that stuff. Because, for us, as Amelie's parents, walking in the door to see her in this state is so....so...so fuckin sad. Sorry, but it is. The only way some days to shake the sadness is to just sort of escape. but how can we do that if she can go at any moment? By golly, I have no idea. Spiritual Gurus out there? advice will be accepted. Right now I just feel calm, so happy I get to hear that voice, and I'm trying to take Hubbs' advice: don't be afraid of something that hasn't even happened. But in two hours I'll be terrified again that we might suffer not just the loss of our precious daughter, but that it will happen violently and traumatically.
As of right now though, darling Amelita is asleep to the serenades of Marielle's sweet voice, her music therapist, strumming her guitar outside on the patio in the afternoon breeze...ok, she's serenading me too, I might be getting tired after all....caffeine wearing off...Starbucks is calling my name. (BTW, did you know caffeine doesn't actually make you less tired? It hits the adenosine receptors in the brain, acts as a central nervous system stimulant, and keeps those receptors from telling you that you're tired. those who drink a lot of caffeine need more and more b/c the brain builds more receptors. that's amazing!!!! It's a Jedi mind trick in a CUP!)