magic tech

isn't life grand?

both today and saturday we talked together

on the computer

live

with moving pictures and sound, full screen

it's so cool and such a blessing

just like we're sittin' there together

-forty five minutes on saturday

it's just so wonderful

she looks so good and sounds so sweet

she's feeling much better

-being tutored and having lunches

and not a doctor or nurse in sight

(she sees her surgeon wednesday)

so, thank god for the technology that brings

me and me kid together

it's just like magic!

back 'home'

well, they're back at the hotel

the doctors don't know why she's had the

flash edema attacks

but she's comfortable and out of 'there'

the doctors have increased her meds

-to really try to get her blood pressure down


i called her this afternoon and she was resting

and told me she felt sick

god love her, it's so tough


but they're back at hotel and now it's

back and forth to the hospital

for appointments and tests


they told us at the beginning

-it's a roller coaster ride

lots of ups and downs

sounds good: looks good

she had yet another bronchoscopy yesterday

all seemed to go well

she called and said she felt fine

they still don't know what's the problem

-or if there is a problem

but she's using her new lungs

and they're working just fine


the doctors say she can go back to the hotel today

-we'll see


she still needs to gain some weight

i wish she was here with me

so i could feed her my milkshakes


in the meantime things are looking good


praise god

heart: good!

she saw the cardiologist today

he was happy to tell her that the right

side of her heart is back to normal

she told me he said that her heart was

the 'worst heart' he'd ever seen

and now it's the 'best heart'

(it's the best heart that I'VE ever seen)

he was amazed how well heart heart has responded

so, no need for heart surgery!!


still don't know quit what's causing her problems

but tomorrow

they are going to have a big conference about it

and hopefully they can come up with some answers


meanwhile, she's doing pretty good

trying to gain some weight


we'll see what tomorrow brings...

back in the unit

she's back at the hospital

back in the intensive care unit

she had the broch on thursday

but that night was rushed back to the unit

what seems to be happening is

-her kidneys aren't working that good

so she fills-up with fluid and

that fluid goes to her lungs (bad valve)

and she can't breath


they gave her drugs to remove some fluid

-cleaned out her lungs

and now she's doing better

they are not quite sure what's really going on


the results did show that there's

NO REJECTION AND NO INFECTION

in her new lungs, there was a collapsed airway

-they put a stint in there and that's helped her a lot


for now, she's doing OK

she might go back to the hotel today or tomorrow


please pray that they can understand what's

happening to her and that they will fix it

also pray that her and her mom will have strength

sick and tired

with all the pills interacting

and all the doctors visits

and phone call and nurses and tutors

-the kid is sick and tired

she texted me and said she's slept

most of the day

i hope it'll just take some time

for the medications to even out

but anti-rejection drugs are tough to take


she and her mom have moved to a bigger

room and now hopefully acacia can get some

good rest and rehab

(and her own bathroom)!


tomorrow it's back to the hospital

for more tests and the dreaded 'bronch'

god bless 'em!!

side effects

it seems she's been having trouble dealing with

the many, many pills she's on

-and they continue to prescribe way too many

they're all interacting with one another

making her really sick plus her blood pressure is way too high

she's on a very high dose of anti-rejection drugs

because she's already had two bouts of rejection


all this plus back and forth to the hospital

-sometimes three different times a day

and there's nurses and therapists and tutors

and lots of phone calls, whew!


she's going to see a cardiologist tomorrow

to check her heart and blood pressure

and thursday is the day for her bronchoscopy and biopsy

http://www.righthealth.com/Health/bronchoscopic-Diagnostic_Tests-Bronchoscopy/-od-images_4-s


poor thing

so much to handle, but she does... (with class)

-what a great kid and a real fighter