she's up, it's good!

it's been a long day for her

and an action packed couple of days

but, there she is, propped-up in bed

her hair in a pony-tail

eyes wide open

(and when her eyes are wide open ...they're open!)

she's doing a lot better


very, very uncomfortable with that huge incision in her chest

and that breathing tube in her neck

but there she is, trying to break a smile


she reached for her mom's hand

then she reached for my hand

and then held both of our hands up and squeeeeezed


god bless her

she's such a great kid

and the nurse she's had the last three nights

can't get over what a trooper she is


she is

sweet, sweet music!

when i got there this afternoon

she was looking a lot better

still real groggy and 'in and out'

but she responed to me a little


later, her mom got back

she had gone to get acacia's iPod

she wanted to drift away listening to music

we put the earplugs in and mom started it

and she enjoyed it


she still has lots of fluid in her lungs

they are pumping it out as best they can

she doesn't have any signs of pneumonia

so that's great


i'll go back later tonight

and we'll see if she's still rockin' out

joy to the world!

well

it's out!

that big huge breathing tube that was stuck into her face

and all the straps and tape and rubber bands holding it on

all gone

now you can see her cute little face and those lips

ah, those beautiful lips


they did the trach this morning

all went well

she's doing good

still out, but, she did open her eyes

ah, those beautiful eyes

i think she saw me and knew i was there

she was moving around a little

coming 'out of it' slowly

the big scary breathing tube is now sticking out of her throat

but things seem much better


maybe later, they'll let her wake-up a little more

joy to the fishes in the deep blue sea, joy to you and me

trach day

later today they plan to do the tracheostomy

they'll do this procedure at her bedside

this will be great

they'll take out the very large breathing tube from her mouth

and all the related apparatus all over her face and head

and replace it with a much smaller tube directly into her throat

this will help her a lot, in many different ways


today they hooked her to a new dialysis machine to clean her out

her damaged kidneys are working a little

but she'll be on dialysis for some time until they are healthy again


one machine off and one machine on


this is much better and they said they're taking

lots of fluid out of her


this will be good because they really want her to dry out

her new lungs (god bless her donor's family) are working

they still are pumping lots of oxygen in to her

but that amount of air pressure is coming down as well



she's still out like a light but maybe

after the next procedure, they can have her be a little more aware

depending on how well she can handle it

and how much she'll want to be awake


i can't wait til all the stuff's out of her mouth

and she can respond a little and (i bet) smile

another day

off to see her this morning

we'll see what's in store today

will update soon

after the machine

now that the big scary machine is gone

forever we hope, the nurse cleaned her up

and now she's resting

comfortably, hopefully

she's still under heavy sedation

they decided to let her rest and heal more today

and for the rest of the evening


and maybe tomorrow, they will do the tracheostomy

tracheotomy |ˌtrākēˈätəmē| (also tracheostomy |-ˈästəmē|) noun ( pl. -mies)

an incision in the windpipe made to relieve an obstruction to breathing.

they need to get the ventilator out of her throat

lots of time there's damage to the voice box


i can't imagine what it would be like to never hear her

sweet little voice again

that would shatter my life

and living so far apart with only the phone as our lifeline

well -whew

we'll see what tomorrow brings

it's gone!

They took out the ECMO

the lung machine that helped her with her gas levels and

all the stuff that lungs do, she's doing on her own!

this machine was big, i mean really big

pumping, hissing, burping, really big and scary

now, ha ha ...it's not there anymore

everything went well and now

she no longer has those huge tubes

filled with blood sticking out of her neck

god love her

maybe later today

they'll take that damn tube out of her mouth

onward and upward

she's making progress