So my friend Vicki (see Ava's page down to the left) was trying to go out of town to a wedding last weekend but couldn't get one nursing shift covered for her daughter, Ava. I offered. It was just 12 hours and they'd be sleeping most of the time anyway. So while it wasn't the most stressful thing ever, it was certainly not something I could do often. I got about 3 hours of sleep because I was too worried to really get in a deep sleep. I don't have any experience taking care of a trach kid, so I had to learn quickly and hope for the best. I *think* I did everything right. LOL And I was back and forth in the evening doing each kid's stuff. At least their meds and treatments were staggered so I could do one then the other. I know people who have more than one special needs kid....I just cannot imagine. It's EXHAUSTING.
But I got some cute pics! I put Charlie in Ava's crib in the morning for the sole purpose of taking a pic of the two together. Ava did NOT know what to think about someone else being in her crib! She went perfectly still and glared at Charlie out of the corner of her eye. After Charlie woke up and we took them out and held them, Ava still kept eyeballing Charlie like she didn't trust her. LOL
But I got some cute pics! I put Charlie in Ava's crib in the morning for the sole purpose of taking a pic of the two together. Ava did NOT know what to think about someone else being in her crib! She went perfectly still and glared at Charlie out of the corner of her eye. After Charlie woke up and we took them out and held them, Ava still kept eyeballing Charlie like she didn't trust her. LOL
Charlie used to be twice Ava's size. Can you believe it! They are the SAME size now! Charlie is 3 months older.
You can tell she's just a wee bit freaked out. Charlie is just glad she's snuggled up with someone.
So Charlie still isn't having too much jerking. We started weaning her phenobarb again so I wonder if she's just absorbing her meds better. Which is why I am weaning the phenobarb at all. I really wouldn't even care otherwise, excpet that it tends to speed other drugs through the kidneys.
We're cathing her more and more. :-( She keeps holding it for like 12+ hours and her poor bladder gets distended. You still never know if it will become a regular thing. The actual cathing isn't bad. It doesn't seem to hurt her and I'm comfortable doing it. It's just a reminder that she's still declining.
So Charlie still isn't having too much jerking. We started weaning her phenobarb again so I wonder if she's just absorbing her meds better. Which is why I am weaning the phenobarb at all. I really wouldn't even care otherwise, excpet that it tends to speed other drugs through the kidneys.
We're cathing her more and more. :-( She keeps holding it for like 12+ hours and her poor bladder gets distended. You still never know if it will become a regular thing. The actual cathing isn't bad. It doesn't seem to hurt her and I'm comfortable doing it. It's just a reminder that she's still declining.
8 comments:
How adorable! Charlie looks so pleased to have a playmate! And they are like exactly the same size! They're both so cute.
Awww they had a girls sleepover! how adorable is that! cute pics of them together in the one crib!
that is so cute. I wondered who she got to watch Ava...I just assumed she got a nurse at the last minute. You made it through and now you can add trach care to the things you can do if you really need to.You are totally amazing!
maybe a huge stuffed animal is the key to helping Charlie sleep better...she looks like the type to be a "heat seeking missle" like my kids are ( they chase you around the bed.LOL
Oh she sleeps with stuffed animals. LOL We use them to prop her up and position her. We usually put her on her side or back and one goes under her knees or in between them, and her arms go over other ones and we put one behind her back or against her sides. She has this little purple bunny she really likes and we snuggle that up to her chest, by her face so she can see it. On nights she really can't sleep, she snuggles with me. <3
just wanted to say that i hope your genetics appt. in a day or so yields some results that are helpful. the pics with ava are so cute :-)
That is seriously super-cute! Maybe having that picture makes the lack of sleep worth it :P Too adorable!
at least she can't roll all over the bed :) my little guy has come close to smothering me in my sleep so many times--I woke up one morning with him literally wrapped around my head...and I cannot count how many time I have found feet or a butt in my face. Although he does have his own bed, most mornings he has crawled into my bed as I sleep. He started it when he was a little older than Charlie is now. Imagine my shock when I awoke at 2am to find him lifting my shirt whispering "nite nite mama" ( his speech delayed version of "i wanna nurse")...
"That is seriously super-cute! Maybe having that picture makes the lack of sleep worth it :P Too adorable!"
Oh absolutely!
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