Amelie stable


This is going to be a brief update, as it's late and I am exhausted. We did not have any nursing today, so it was a busy day tending to Amelie. Last night was uneventful, thank the Lord!!!! And she's finally urinating again. Oh, and Amelie has not vomited in two days! (we're giving her hard core anti nausea meds via IV. And by we, I mean me. The home nurses are not allowed to give IV medications, and I don't want hospice nurses in my house all day, even though I love them, so I do it myself.)

 

Her lungs are clear. She still has some secretions and her throat, and then a diffuser with eucalyptus oil in her room to help her airway. I can't say enough about the power of using essential oils and a diffuser. Last week I don't think that sentence would've ever come out of my mouth. But Auntie Melanie sent us this and absolutely insisted, and since I always  just do what she tells me to do, we put it in Lulu's room. What a difference it makes. We can't open the windows because the air conditioner, so it gets pretty stuffy. That diffuser has totally brought a new energy!

 

Unfortunately, she still needs oxygen. Her ability to breath is just not strong enough. And she's had many seizures today. We went from having almost no seizures for many weeks to several in a day. She is not desating, but they are a scary indication of the next big one That could come. Kind of like the earthquake in California. I grew up always hearing, "the big one is coming!" This is exactly what it reminds me of.

 

She was more alert today, her cheeks no longer flushed red, her skin color return to milky softness. Definitely an IMPROVEMENT!!!! She had slightly more muscle tone in her hands and feet, however he is still unable to move her head. Basically her motor functions continue to rapidly decline. I'm hoping she'll recover from this, but what boss and I are truly terrified of is this decline lasting weeks or months. It's a torturous existence. For her. For us.

 

Thank God the NBA Finals were on tonight! Lebron James, or as he's known in this house, King James, is the perfect distraction from an otherwise immensely heavy anxiety. (Let's not talk about the score)

 

since we don't have a nurse tonight, my mom and I are taking shifts being up all night. We have to keep an eye one her and make sure she doesn't vomit or have seizures that we don't see. (When I look back and think about how picky I was in hiring a night nurse, I'm embarrassed about what an ass I was. I should've just picked someone who was competent and not been so darn choosy. That way, I would have her in the rotation already for something like this.)

 

Honestly, I'm still foolishly hoping she'll recover from this. I'm asking God for a Miracle. Come on Lord, let's see one, a "big one."  

More updates to follow 

xoxo

 

Amelie's mommy