i’ve written before how this whole cf thing has been coming in layers for us.

we are okay for the most part, and then something happens.

we read an article on facts of the disease.

baby girl gets sick.

or i see a parent post the news of her child hospitalized, or worse…

 

i truly thought we were done with the realizations, though.

we hit another bump.

hurdle?

mountain.

and things have been so great, too!! i am never in a million years discounting that.

but even when things are going well, you need to be leveled out, i gather.

i have been working a lot. praise! the hours are crazie and it throws off the whole rhythm of the family — i came home two nights in a row and was greeted by baby girl at 5:30am. C had been up with her for hours during the night and then he would be off to work the next morning. yikes. the amazing part was when he said it was his honor. (i’m a lucky girl)

i haven’t been sleeping much, either, so that takes a toll on all of us because all of momma’s patience goes out the door and if anyone eats too loudly, all y’all gonna hear about it! #monstermommy

but we keep on, cause that’s what ya do.

so we got baby girls vest.

Oh the vest…

it takes place of the CPT. you strap this vest around her little self, hook up a hose that is connected to the machine, basically a compressor, and when turned on, blows air into the vest at super high speeds, thus shaking her tiny body for 20 minutes, loosening up the extra mucous her body produces…

it sounds like a diesel engine?

a generator?

a Mack truck.

but overall, it sounds easy enough, right? i mean it’s only 20 minutes!

twice a day.

when she’s well. (up to 4x when she is ill)

to an adult, who can comprehend that this is essentially good for her body, 20 min is still a drag, but she does it.

to a new one year old, enduring the shaking so much her voice rattles, 20 minutes is absolutely unbearable and she will do anything to get away and make it stop.

all the while screaming.

to add insult to injury, there is also something called pulmozyme which thins the mucous; this medicine must be nebulized during the vest treatment. keeping a nebulizer over baby girl’s face for 10 minutes, while she’s shaking in the vest, is pretty much impossible. some noted side effects of the pulmozyme include a raspy voice and red eyes. so her frantic cries during the vest are now hoarse and raspy frantic cries.

i sit and hold her.

i stand and hold her.

i sway back and forth.

i sing sotly. i sing loudly.

i ease into the treatments.

i start them fast.

i turn on a disney movie. baby einstien. daniel tiger. bubble guppies.

the volume is at the highest it can go.

and we still can’t hear the tv fully.

*insert little C’s voice…”moohm-meeeeeeeh!!!! i can’t hear the t.v.”

 

confession time:

some most times i end it 5 minutes early.

some most mornings i don’t do it.

it’s not because i say “eff that thing! it won’t help her and even if it did, screw it!”

there are a million reasons i can find why it’s not the right time — heck, today’s reason was

“it looks like it might storm and i don’t want to have a power surge.”

hey, that’s a valid fear…

guilt. guilt. guilt.

she can’t be too tired or have just woken up.

she can’t be too hungry. and definitely not have just eaten. all that food in her belly jumbled around. oof.

so one must find the exact precise moment in time, twice a day, for the 20 minute emotional upheaval treatment.

it’s our mountain.

it’s a huge adjustment.

but our child’s health is the utmost importance, we are finding our groove.

we will get it.

i believe in us.

 

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