Acacia UpDates

now a word from our sponsor

2008-05-28T07:56:00.000-07:00

no more

2008-05-13T20:14:00.000-07:00

there will be no more posts

and no more infomation about her condition

at the request of acacia's mother

prom night

2008-05-10T12:11:00.000-07:00

i'm back from seeing her
and she's back to her life
a great new life
and enjoying it
like last night
she went to her prom
(with some guy, ...not her boyfriend!)

thank you god

and thank all of you for your prayers

now, that's better

2008-05-01T05:40:00.001-07:00

she finally has driven her new car

...to get the insurance inspection

it passed, it's licensed and it's all ready to goooooo

-for years and years of motoring bliss

ya see

she was back in the hospital again

she got pneumonia

but, -the fighter she is

... a couple of days of antibiotics

and she's back in the ballgame

she seems a lot better now

and now ready for the sweet feeling

of the freedom of driving her new car

now, that's much better

safe at home

2008-04-24T19:07:00.000-07:00

just like today's game...

(the angels beating the red sox)

her car is 'safe at home' (see photo)

more doctors today

her kidneys are still an issue

and her doctors here are keeping an eye on her

she has to go back to pittsburgh to those doctors

until 'it's been a year'

next scheduled time is in june

so she's happy with her car (me too)

but please keep her in your prayers, thanks!

what a wonderful world

2008-04-24T04:31:00.000-07:00

well, we found it!

the exact car we were looking for

it didn't take us long

a half day of driving around

then

right in her own backyard

there it was...

THE '99 honda accord

P E R F E C T

gonna pick it up today

we couldn't be more thrilled

at least i'm happy, anyway

-it might take a lil' more time for her to soak it all in

she's going thru so much

she's such a strong and resilient lil warrior

and now she's on the road

(hide the children)

god continues his blessings

and your prayers continue to be answered...

...at long last

2008-04-22T20:43:00.000-07:00

well, i'm here

and so is she

no pittsburgh, no hospitals, no nurses

just her and me

having a sundae

talking and laughing

just being together

like it should be

she looks great, feels great

and is a ball of energy

tomorrow she's got to do some medical stuff

(we'll have dinner and hang in my room)

but, thursday, we're off in search of 'the car'

THANK YOU, JESUS!!

2008-04-08T18:39:00.000-07:00

HOME

headed in the right direction

2008-04-08T07:33:00.000-07:00

great news

the results of the broncospy came back

NO rejection

NO infection

she's headed in the right direction

home

they are cleared to go home today

pittsburgh will lose it's sunshine

and carver will get it's sunshine back

great news

2008-04-01T07:28:00.000-07:00

great news!

her broncospy this morning went well

everything looked wonderful

her airways were clean and open

the results about the biopsy and cultures

will take a couple of more days

but basically they are clear to leave

and go home on the 8th!!!

it still doesn't seem real to me, either

ready set go

2008-03-31T17:42:00.000-07:00

they went to the hospital today for pulmonary rehab

then she had an echo and saw the pain doctor

they ran into the pulmologist and she said that they wanted to

move the bronch to tomorrow instead of thursday

so she had to go get an x-ray and pft's (breathing tests)

so pray tomorrow goes well

as we all know it will

('cuz we got faith)

new hope

2008-03-27T07:08:00.000-07:00

spring has sprung

the red sox have opened the season

and we're saving daylight everyday

she's had some great days in a row

for a while now

she's doing math class via video phone with her class

she's doing rehab

and reading me the paper about the red sox

and their upcoming date here with the dodgers

we both have lots of hope

god has been great by helping her everyday

she's gaining strength and resolve

she perseveres and maintains in spite of difficulty

she's a warrior with a lot of help

new hope prevails as she looks forward to

going home and starting the next chapter

a little something different

2008-03-18T20:36:00.001-07:00

this is the grandson of somebody very special to acacia's recovery
his grandfather helped organize the 'one minute for acacia' sunday
now he needs our help
he needs us to give our time and ask GOD Almighty
to bless and protect this sweet little fellow
will you take a minute
-give thanks
-and ask GOD for some help

PUSH
Pray Until Something Happens
THANK YOU

safe at home

2008-03-15T15:04:00.000-07:00

she's back at the hotel (home)

she's feeling a little better

had a rough morning

but seems better now

they thought yesterday that maybe she had a blood clot

so they poked her and did some different tests

and then let her go

she's cancelled her weekend plans

and now plans to take it easy

god love her

more ups, than downs

2008-03-14T15:01:00.000-07:00

our girl has been doing pretty good lately

they have even made their plans to return home

she'll be in her own bed in early april

but

right now she's in the emergency room

chest pains and headaches

they think it's some fluid build-up

she wants to get outta there

she feels ok now

please continue all your prayers

thanks!

one more to go

2008-03-04T13:53:00.000-08:00

acacia had her broncoscopy and did good

they didn't have to put in another stint

she said that the airway is open!

the doctors didn't do a biopsy today

they want to do it next time

probably in early april

this week see has a couple more appointments

and if all goes well, it seems, that maybe

she can go home after that next bronch

!!!

can you believe it??

please just keep praying

that god will allow this long ordeal

to move to the next stage

HOME

side effects

2008-02-29T14:59:00.000-08:00

at about 28 different medications

imagine the side effects

this pill makes you feel faint

this one makes you sick to your stomach...

now, the new one she's takin' to help her blood flow

...is making her have bad body aches

she couldn't move her hand this morning

so

they take more blood

and do more tests

but at last report

she's doing pretty good

she got a new wii (don't ask)

and is really enjoying that

her next brochoscopy is tuesday

we'll let ya know how she does

thanks so much for you continued love and support

ok

2008-02-24T07:27:00.000-08:00

things are going ok

she has her next bronc test on march 4

the last one showed no rejection

but she still does have infection

she's studying and rehab-ing

the main thing is

she's doing a lot of window shopping online

-and that's always a good sign she's feeling better

we'll update when there's something

again, thanks for your continued prayer

flat spot

2008-02-18T20:43:00.000-08:00

at a flat spot in the roller coaster

no ups and no downs

she had an OK weekend (a lil' sick)

sleepin' OK

nothing special

all-in-all

she's doing OK

-thanks for checkin'...

good procedure

2008-02-15T09:35:00.000-08:00

she just texted me

she's out from her bronch

all went well

they took out her bad stint

and opened up her airway

they are not sure if they will put in a new stint

she'll have yet another bronch in about two weeks

so she did good

thank you, jesus

and they will let her go home about 4 est

home is the hotel

but

-it's been home for the last 6 months...

another rough one

2008-02-13T16:06:00.000-08:00

at least she's out of the hospital

got home this morning, then slept

the results from her tests should be back

in a day or two

maybe that will tell them what's going on

she's just sick

they are working on lots of different areas

she called and said she's beat -gonna rest more

so while she rests

let's all continue to pray that she will continue to improve

and live a happy life with her new lungs

happy valentine's day

and make sure you love the one you're with

thank you for all your love and support

back in the hospital

2008-02-12T19:40:00.000-08:00

not a good day

lots of probing and poking

poor thing...

she's sick and coughing-up blood

they found that the stint in her lung

has grown over with tissue

they want to remove that

and maybe replace it (it's in her lung!)

she might have infection and maybe worse

she's doing a little better tonight

in the hospital for observation -they say

back 'home' tomorrow -they say

what they say is that they can't say what's really going on

but they are the best there is

and she's being watched over by

the very best there is

so that's good enough for me

(i just wish she didn't have to CONTINUE to go through this)

understanding circumstances

2008-02-12T07:35:00.000-08:00

surrendering to to god's plan

will free us

circumstances may not change

but our attitude toward them

will

we will have peace, contentment and faith

that faith and confidence

protects us for all anxiety

because we focus on god's plan

and provision and promises

and a life without anxiety

is free

lots going on

2008-02-11T16:11:00.000-08:00

she's still sick

stomach aches, headaches and other stuff

saw a couple of doctors today

went to rehab

and had a chemistry exam!!

she's really been in a whirlwind

and trying to get better

her pulmonologist said there's 'something' going on in her lung

and tomorrow they are doing the broch

we'll all know what's happening soon

in the meantime, say your prayers

thanks!

a good week

2008-02-08T21:21:00.000-08:00

she was schooled

did her homework

we iChated a couple of times

(which is still the coolest thing in the world)

she did rehab and shopped

a good week

monday she does yet another brochoscopy

and various assorted tests

a few doctors visits

and we'll see what that brings

not so super sunday

2008-02-03T20:23:00.000-08:00

she wore her pats jersy all day

probably, (but hopefully not) stayed up late

-til after 11 her time to see her patriots

not quite make it a perfect season

i do know she stayed in the room all day

and watched the game and

took some photos

< < < < showing what a beautiful daughter

her dad has...

great saturday

2008-02-02T15:08:00.000-08:00

got her hair cut and colored

shopped

gonna teach pittsburgh people how to make

real italian food

and just waiting around

to see the patriots win the super bowl

some good news

2008-01-31T12:16:00.000-08:00

she just got back from the renal doctor

the doctor and the test say...

that her kidneys aren't s bad as they thought

she reported that everything went well

and her kidneys are better and that

they cut her pill for that problem in half

now she's down to 29 and a 1/2 pills everyday!

uuuuuu-up and downhill

2008-01-28T21:57:00.000-08:00

she had a great weekend

shopping and lunching with friends

she had a doctor's appointment this morning

they said her lung function was pretty good

and she's getting stronger and lungs are more powerful

then

the hospital called

with some results of some blood work

-her kidneys are going downhill

they wanted to admit her back in the hospital

but they are gonna let her try some stuff on her own

until wednesday, then re-evaluate

god love her

this kidney thing has been trouble all along

please pray that they kick-in gear

and start to properly function

-this kid needs (yet another) break

this sez a lot

2008-01-27T15:03:00.001-08:00

today she went shopping

good run

2008-01-23T19:46:00.000-08:00

she's had a couple of good days

-in a row

it's been good

she's eating good and happy about it

keeping most everything down

and doing some livin'

-doin' stuff, getting tutored, stuff

today see saw her surgeon

he took her off some pills

and added some more pills

-that's her deal right now

lots of meds, but he's happy with how she's doin'

and she's happy too

-looking forward to to getting a car

-doin' lots of research on just the right one

your first car ...ahh there's nothing like that feeling

i'm so happy she gets to finally feel it

magic tech

2008-01-21T17:08:00.000-08:00

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'

2008-01-18T22:45:00.000-08:00

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

2008-01-18T08:31:00.000-08:00

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!

2008-01-14T20:46:00.000-08:00

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

2008-01-13T08:03:00.000-08:00

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

2008-01-09T07:53:00.000-08:00

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

2008-01-06T15:39:00.000-08:00

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

there's some issues

2008-01-04T14:29:00.000-08:00

there have been some things to take care of

she's had some stomach problems

and other little problems as well

she's seen a couple of different doctors

she saw her surgeon yesterday

and he was pleased and said that everything looks good

-a knee doctor and he said 'don't worry about it'

they did take out her catheter for the dialysis treatments

so, that's good

she's just plugging along and waiting now for

her 'broch', they'll go in there and check out

her new lungs for any problems or rejection

that's what's next

in the meantime, thank you all so much for your concern

your love and prayers and support

we all really appreciate it very much!

happy new year

2007-12-31T08:05:00.000-08:00

christmas has come and gone

birthday has come and gone

she's still in pittsburgh

-gettin' better

today she had some doctors appointments

-they are keeping on eye on her

and tonight's new year's eve

let's all thank god for the blessings of this past year

and the miracles he's worked on acacia

she's been in his care the whole time

and she's come such a long way

-and breathing on her own with her new lungs

pray for happiness and health in the coming year

for us all

08's gonna be great!

birthday

2007-12-28T21:15:00.001-08:00

she's out

she's seventeen

happy birthday, baby!

it's a christmas miracle

2007-12-26T20:36:00.000-08:00

she's out

she got released today

she said it was like getting out of prison

(one of her favorite shows is 'prison break')

they went to the hotel for more christmas

and she spent the day figuring out her new iPhone

she's so happy (aren't we all)

she's been there for so long

and has gone through so much

thank you all for all your love and support

she'll be at the hotel , maybe another month

there are already appointments with various doctors

piling up (they are gonna be keeping a eye on her)

but for now, she's doing good and out!

thank god for this wonderful news

merry (happy and joy-filled) christmas

2007-12-24T11:43:00.000-08:00

she just called me from her hotel room

she's out!

-not for good, quite yet

but for today (and tomorrow)...

IT'S CHRISTMAS!!

thank you all for what you sent her

-you know who you are

she's right now in her room (in street clothes)

opening presents and activating her new iPhone

-she's thrilled

so aren't we all

and to all

a merry christmas!!!!!

hurry, wait, get better

2007-12-22T12:43:00.000-08:00

she's been so looking forward to...

getting outta there, just in time for christmas

but

Acacia had a setback, her lungs filled up with fluid the other night

and she was couching-up some blood

they treated her with Lasix and didn't have to go back on dialysis again

this is the third time this has happened

they say she's getting stronger and it shouldn't keep happening

so

going 'home for the holidays' (the hotel)

might not happen

they might let her and her mom out for christmas (day pass?)

so they can enjoy the holiday together

please continue to pray for our girl

no more machines

2007-12-18T08:00:00.000-08:00

what should be (we pray)

the last of the machines

was removed today

she has been 'signed off' dialysis

her kidneys are working well enough

that the doctors feel that she doesn't need dialysis

this is so great

my mother had to endure dialysis 3 times a week

and it's a real tough process

-taking all the blood out of the body

cleaning it and them returning it

-scary

well, no more for our girl!!

please continue to ask god for his protection

and provision for acacia

and please praise and give thanks for

all this wonderful news that she's been given

the next miracle comes friday

when she's scheduled to be released from the hospital

-praise god!

"it's out!"

2007-12-17T10:16:00.000-08:00

she just called me this morning

and yelled, 'it's out'

yes

they have taken the tube out of her throat

-no more trach tube

she's been talking for a while and talking good

but now, no tube

and they think that the hole will close-up soon

she also told me that she expects to 'be released' friday

naturally, she can't wait to get out of the hospital

and back to the hotel

she's so looking forward to that

-to spend christmas with her new pittsburgh friends

and then her birthday too, 'outta the hospital'

she's doing so good

and it's so unbelievable that this long hospitalization is nearly over

-still a long way to go

-still she's come such a long way

what a christmas gift for all of us!

it's a beautiful day

2007-12-15T09:17:00.000-08:00

what a great day!

-just got off the phone with acacia

we had a nice, long conversation

she talked about what she's been through

and where she's going

and all the things she's looking forward to doing

can't wait to get a car and get a job and get back to school

and get to her senior year and travel and fly and come back to california

she's getting her trach-tube out of her throat monday

and hopefully be released to the 'hotel' next week

she's so excited about using her iPhone and being away

from all those other machines...

she talked about how she's not used to not being

hooked-up to her flolan pump

-she's been dragging that thing around for years

and now she's free!

she's thinking about writing a book about her experiences

we talked about a new title -"UnHooked"

because now, she'll be free from that pump

what a great conversation we had

-so full of hopes and dreams and future conquests

kinda makes you think about what's important

and how some problems and set-backs in life are just

-plain silly

she's a champion and she's (again)

made my life worthwhile and complete

anonymous comment

2007-12-14T07:28:00.000-08:00

Anonymous has left a new comment on your post "looking good":

And without faith it is impossible to please God,

because anyone who comes to Him must believe that

He exists and that He rewards those who earnest seek Him.

Hebrews 11:6

The hard thing to understand is that faith is

the one area in our lives where growing up means we must grow

to be more like a child, trusting simply in the goodness

and complete knowledge of a Father who has our best interests at heart.

adversity is a bridge to a deeper relationship with god

only genuine faith can bridge the gap

looking good

2007-12-13T12:34:00.000-08:00

she's happy to report

that her 'bronch' went well today

her lungs are clear and she's breathing good

she told me that she goes the whole night without

the help of an oxygen machine

she also got a new g-tube put in today

-the old one was leaking, -new one now in place

-that tube's there just 'in-case'

her nurse called me and said she's doing great and

looking good

they might take her trach tube out soon too

boy, will that be wonderful when that's out

so, it's all good

thank god and thank you all for your prayers

Thank You So Very Much

2007-12-12T20:38:00.001-08:00

100th posting

2007-12-11T22:53:00.000-08:00

this is a very special posting

not because it's the one hundredth

but because she called this morning with

lots 'o good news (and was so happy)

she said that she just finished physical therapy

-not for the day, but finished

(they signed her off) -very happy with her progress

also that her kidneys are working much better

and that her lung infection and her rejection

seem to be under control

and that she seems to think that

they may let her outta there by next friday

-next friday

that's so unbelievably great (thank god)

she's such a tough kid and so hopeful

she's gone through so much, fought so hard

and over come so much

yet, there's a long road ahead

but she's traveled so far already

and so far, so good

and now ...a rare infection

2007-12-11T14:25:00.000-08:00

today we found out that her doctors

are treating her for a rare lung infection

also that the tube in her stomach

that they can feed her through and

can administer medications into

...is leaking

and that the biopsy of her lung tissue shows

stage one rejection

however

even though that all sounds pretty scary

she seems to think it'll all be taken care of

-they're fixing the tube

giving her meds for the infection

(it's an oral anti-infection drug she breathes)

and they feel they will be able to treat the rejection

she's in good spirits and just wants to get outta there

she just called (doesn't that sound great)

had a GREAT talk, they've fixed her tube

and she's looking forward to her pizza dinner

(doesn't that sound great?)

the power of prayer+

2007-12-09T09:34:00.000-08:00

today was the 'one minute for acacia'

where people from all over the country

-in and out of churches

took a least one minute to ask god

-to continue to protect and preserve acacia

and to continue her wonderful healing

well, it worked

she texted me that they wanna kick her out of there next week!

i can't believe it, so wonderful and so powerful

i want to personally thank everyone so much for all the love

and thank my father in heaven for all his unconditional love and protection

one minute for acacia

2007-12-07T07:18:00.000-08:00

please don't forget

this sunday at 9am (local time)

is when we ask churches and believers everywhere

to take (at least) one minute

to thank god for all he's done for acacia

and to ask for his continued protection

and blessing of her

please see the link at the left of this page

and urge all other believers and their pastors and churches

to do the same

thank you all for all your love and compassion

and your prayers for the health and healing of acacia

god bless you all

happy to report

2007-12-06T13:00:00.000-08:00

happy to report this morning that

her two 'procedures' went well

cleared out her lungs good

and

biopsyed a piece to check for 'rejection'

she said she's breathing much better and feelin' great

and that makes me (us) feel great too

two months

2007-12-05T09:00:00.000-08:00

it's been two months since her double-lung transplantation

two months in that hospital

way over two months in pittsburgh, PA

away from her home and her bed and her family and friends

and school and all the things she needs

but

after two months

she has made tremendous strides

over-come one thing after another

been brave and courageous and has made others

much more considerate of their circumstances

she's an amazing kid, growing into an amazing woman

and over-coming all of this, little by little

day by day

tomorrow, she's scheduled to have yet another surgery

-a another biopsy of her new lungs

to check for any rejection

(how could those new lungs not want to be with her?)

after all these 'procedures' and after all this time

the only thing she's distressed about is that

her new iPhone can't be activated quite yet...

WHAT-A-GIRL!!!!

now to our reporter live at the scene

2007-12-03T15:24:00.000-08:00

she and i were texting

and i told her that she is now the only real source of information

about her condition , so...

she called!!

she told me that she did dialysis today and will probably need it

even after she's released to the hotel

but that they think that eventually, her kidneys will come back strong

and that her vocal cords are getting stronger everyday

she said she's eating good and gaining weight

and getting stronger everyday

she sounded great

-ohh to hear her voice

she said it's snowing like crazy outside and she's got a great view of it

they're doing different types of physical therapy on her

and she's walking a lot now

so things are looking good

still lots of rehab and lots of time

but steady progress

and breathing with her news lungs

-all on her own

thank you jesus!

christmas comes early

2007-12-02T16:40:00.000-08:00

HO HO HO

she's better now

2007-12-02T15:59:00.003-08:00

they want to move back upstairs

and get her out of IUC

but there are no beds up there

so she has to spend another night there

she told me in a text that

'she's doing great'

and that's great news

a little set-back

2007-11-30T13:29:00.000-08:00

acacia had a little set-back last night

it seems something she drank got into her new lungs

they sent her back down to CT ICU

and apparently they've taken care of her

they had to clear out her lungs and put her

back on a ventilator for a time

but as her nurse just told me

she's back, now breathing on her own with

just some oxygen gong in her nose

and sitting up in her chair

thank god it wasn't any worse and please

-keep her in your prayers

more thanksgiving

2007-11-28T07:35:00.000-08:00

here is what someone named Anonymous has left as a new comment:

I will give thanks to the Lord with all my heart;

I will tell of all Thy wonders.

I will be glad and exult in Thee;

I will sing praise to Thy name O Most High.

I say 'amen'!

more and more good news

2007-11-27T17:27:00.000-08:00

however

it seems they are going to wait to

take her off the bipap at night

but today, they put in the smallest trach tube

that they could find and

she doesn't have the oxygen hooked-up to her tube anymore

she's breathing on her own!!

-with her new lungs and doing great!

today, we did a lot of texting and instant messaging

and we know now how to send pictures back and forth

-her hair is so long and beautiful -a sight for sore eyes

she's feeling good, looking good, eating good (massive amounts) and

breathing on her own!

another one bites the dust

2007-11-27T08:07:00.000-08:00

we texted each other this morning

she told me that today they will be replacing

her 'trach tube' with a smaller one

(the smallest they got!)

and that maybe, just maybe

they will get rid of the BIPAP machine

that's the machine that 'helps' her breathe at night

she (probably) no longer needs it!!

and yet another machine is gone

thank you lord and thank you all too!

she talks!!!!

2007-11-26T13:57:00.000-08:00

there's so much good news today

i don't even know where to begin

it began when she texted me at 5:51 am

-to tell me it was a good day and that she can now shower (whew)

and then went on to tell me all the food she's been eating

cheeseburgers and pizza and for breakfast yesterday she had

a turkey dinner!!

they are gonna do surgery wednesday on her vocal cords

-to try and repair the paralysis on the left side

then my cell phone rang...

IT WAS HER!

TALKING!!

-so sweet and soft, she covers the hole in her trach tube

and it works, it was hard for her to talk

i was so overcome with emotion, that i could hardly talk

we talked for a good while, she got tired

it was like i was dreaming, i couldn't believe my ears

what a miracle this day has been

it's been seven weeks since i've heard her voice

i'm so happy and we all are so blessed!

(Great) CarePage Update

2007-11-25T14:29:00.000-08:00

FROM HER MOM...

Hi Everyone,
The doctor came in to see us around 9 PM last night.
I asked if we could give Acacia the nausea and pain medicine
around the clock so that she doesn't wake up with a problem,
and stop the tube feed that she was on as I thought that was the original one in ICU that was giving her the diareheria.
He agreed and today Acacia woke up feeling more like herself.
She walked the length of the floor twice!
She hasn't had any more diareheria and her nausea and pain are much better.
She has started eating, and her appetite seems to be improving.
She is 96 pounds.
A little pixie, but her smile is back.
The doctor came by this morning and I asked if I could take her in a wheel chair
off the floor just to give her something different.
He let me take her with oxygen, she was so happy.
I hope Acacia continues to progress and get stronger,
I know they keep reminding us that she may backslide a bit,
but it was just great to have Acacia back.

THANKFULNESS

2007-11-23T07:50:00.000-08:00

i heard from her this morning

we did a little texting

(i love it when we do a little texting)

she said that the drugs she's on are

making her hair and nails really grow

also that they're doing the swallow tests

and that she can't keep anything down

it goes in and then come right back out

we decided that her stomach needs to get used to food again

-but what do we know...

BACK TO THANKSGIVING AND BEING THANKFUL...

thankfulness reinforces my hope and my faith

when i remember and thank god for all he's already done

my trust in him gets stronger and

i look all the more forward

-and can't wait to see

what he will do next

nothing

2007-11-21T11:24:00.000-08:00

i called back to pittsburgh

4 times

got nowhere

the phones just keep ringing and ringing

-from one to another to another

'please hold on'

for over 25 minutes

that's enough (for now)

simply 'hurting'

2007-11-20T11:33:00.000-08:00

lots of pain and just being uncomfortable

they, now really don't know why she had that bad rash

they are 'adjusting' her medication

-seeing what works best for her (practicing medicine)

she is sitting-up in her chair and watching tv

they tried a 'swallow test'

and do another, more extensive one tomorrow

so

again

one day at a time...

CarePages Update

2007-11-19T17:32:00.000-08:00

FROM HER MOM...

Monday: our nurse today is awesome. I asked her if a bigger room opens up could we move, and she made it happen! We have a much bigger room, so now all the machines and my cot fit in just fine, today there wasn't enough room for me to stay in the room when she had dialysis as the two additional machines and nurse took up all available space. I was able to go for a walk and have lunch but then the nurse called that Acacia was really upset that I wasn't there.

The nurse practitioner in charge of this floor is really on the ball.
She and our nurse went through all of Acacia's medicines and saw that one med dosage was probably way too high. They took blood to check the level,
and will adjust accordingly. This drug is an anti rejection drug that can make you really nauseous so maybe that is why she feels so lousy.
Acacia started out great today, but then the therapists walked her
and that wore her out. Then she had 3 hours of dialysis which really wears her out. So hopefully tomorrow will be a better day.

The primary nurse on the floor came in and said her job is to teach Acacia all the pills and when to take what. I asked her how many pills and she said around a dozen, five that she will have for the rest of her life a few for a few months.
Acacia and I smiled and I told her that would be a piece of cake after the last five years with the Flolan, pills we can handle.
She was really impressed to hear how responsible Acacia has been
-taking care of her pump, making the Flolan etc.

access denied

2007-11-19T13:09:00.000-08:00

acacia is now in a heart/lung transplant unit

i'm having a little trouble getting any information

about the condition of my daughter

the three times i called back to pittsburgh

this is what happened

1) was told they can't not give me any information

2) was transferred directly to acacia's room

(where i know the phone has been unplugged for acacia)

3) she put me on hold forever

i'm looking into the matter

through the patient administrator

wasting away?

2007-11-18T16:16:00.000-08:00

she text me and said she's down to 80lbs.

!!!

i knew it

why can't they give her enough nutrition?

she said that she's likes her new room and nurses

i'm not quite sure where she is (what kinda set-up)

she doesn't feel good today

i told her to just rest...

CarePages Update

2007-11-18T08:14:00.000-08:00

FROM ACACIA'S MOM...

Acacia moved upstairs to 9D late last night.
The room is like a closet and the nurse wasn't thrilled to see the cot.
Acacia had a good night's sleep.
She still can not eat or talk, so the phone is disconnected in the room,
it is one too distracting, and two really stressful as she can't talk and then she gets sad/upset.
The internet is down again at the hospital but keep the messages flowing as i will print them here at the hotel and bring them into her.

So this is the start of the next chapter!

thank god for texting!

2007-11-17T17:10:00.000-08:00

a lot of people don't like this 'texting thing'

it's a life-line for me and my kid

and i just had a wonderful session

she told me all about

-that they're moving her upstairs

-and how happy she is about getting out of CTICU

-and that she got some 'signed' stuff from

the world champion boston red sox players

-and that she's got a smaller trach tube

-and that they're gunna work on helping her talk

(a matter of time)

she sounded great and she also said that

she misses me soooooooooooooooo much

THANK GOD FOR TEXTING

suddenly, cooperative

2007-11-17T13:32:00.000-08:00

now, all of a sudden

this nurse wanted to tell me everything

-i couldn't get her off the phone

wonder what's changed

she said acacia's in her chair resting

she's been busy

went for a ride in the wheelchair

went for a walk

had the trach tube replaced with a smaller one

got her 'transfer orders' (she's moving upstairs!)

the nurse said that her rash goes away when they treat it

and that she hasn't been on the ventilator for 'awhile'

at night she's gets assistance with the bipap (creating pressure in lungs)

and all day long, she breaths with her new lungs

-with an oxygen mask (set at the lowest setting)

she's doing good, and has come a long, long way

we'll see what 'upstairs' brings

'i thought something was fishy'

2007-11-16T18:53:00.000-08:00

THIS IS WHAT WE'VE BEEN DEALING WITH

me once or twice a day on the phone

and acacia and her mom 24/7

CarePages Update
from acacia's mom

It is unbelievable if you saw her the last two days, you would not think it was the same patient. Acacia developed a very serious allergic reaction to two medicines not interacting well. It actually started at the beginning of the week, and became progressively worse. Each time she would suddenly complain of being on fire, and her chest would hurt and she would be numb all over. I would ask what did you give her for medicines, I think she is having a reaction to something. Each time the nurses would say oh she can't have a reaction now it would of shown up right away. She has been on the same meds since the beginning. I would argue that in Acacia's case she "develops" allergic reactions over time. They would say that is not possible. And it would be dropped.

Yesterday I walked in to find Acacia in the chair all blotchy red, hysterical without noise, writing she felt like she was on fire. She had been calling the nurse with the call button but no one answered. Of course the nurse complained she was overworked with the two patients.. She also had chest pain, I called for the nurse who in a very condescending tone told Acacia "you're fine you are just upset: Well, I told her my daughter does not cry or complain get a doctor, she came back a little while later and said they have other emergencies,,,,
so the next person who walked by I grabbed by her coat, she was shocked and told me she wasn't "on" yet, I told her I didn't care get help NOW, the charge nurse came in and immediately said you're right it is a reaction to something it is definitely not anxiety. Then the doctors showed up and it took them a few hours to figure it out.

'excellent'

2007-11-16T08:12:00.000-08:00

i pulled more teeth this morning

with no novocain

i even raised my voice a little

to pry some news outta her nurse

she loosened-up and told me

that she's having an excellent day

she's doing the bipap machine at night (all night)

and is breathing (with the mask) on her own all day!

she's had yet another walk

and is walking great, no huffing OR puffing

she's sitting up in her chair

and looking great (i already knew that)

sooooo

our prayers are being answered

as a direct result of our hope and trust in jesus christ...

2007-11-15T19:25:00.000-08:00

'like pulling teeth'

2007-11-15T08:14:00.000-08:00

that's what it's like

-trying to get some information about my kid

from this hospital and my daughter's nurses

the nurse's station IS ACTUALLY annoyed when i call

her various nurses DO NOT have the time of day for me

(maybe they're busy) always?

-i don't think so, i was there and watched...

i'm getting no info from my daughter

(so i don't know if she can even text or email)

-even though i've heard she's been 'on the computer'

and no word from her mother (there all alone to take care of acacia)

the REAL STORY, however is that

she IS in good hands and so am i

-and that...
SHE DID DO THE BIPAP MACHINE LAST NIGHT
SHE IS SITTING UP IN HER CHAIR
SHE IS ON HER OXYGEN MASK (NOT ON THE VENTILATOR)
SHE DID GO FOR ANOTHER WALK TODAY

and that ...'she's resting comfortably'...

worn out

2007-11-14T08:21:00.000-08:00

the nurse was 'ummmhu' 'ummmhu'

-pretty non-communicative

but what i did get outta her

was that acacia DID go all night

with the BIPAP machine

-which should have helped her struggle with breathing

and that now, she's back on her 'trach' mask

-breathing on her own

she told me that she went for a little walk

again

this morning and that she's a little

'down-in-the dumps'

i guess so, god love her

she's getting worn out

and i'm sure sick and tired of all this

workin' at it...

2007-11-13T16:47:00.000-08:00

the nurse said she's still workin' it

been off the ventilator and

on the 'trach' mask

working hard to breath on her own

they said that she can't do this

for much longer

she's gonna wear herself out

they tried to put her on this 'BIPAP'

What is a BIPAP Machine?
The BIPAP machine is a specific type of breathing machine that helps the patient breathe. It is a small, bedside respiratory machine connected to tubing and a facemask worn by the patient. The BIPAP machine does two things - it helps push air into the lungs and helps hold the lungs open to allow more oxygen to enter the lungs. Each time the patient breathes, the BIPAP machine assists the patient by applying air pressure to the lungs while the patient is breathing out (exhaling or expiration) in order to hold open the air sacs in the lungs.

-last night, but she couldn't handle it

but the nurse said they gotta try again tonight

(the doctor said he'd lower the pressure)

so tonight might be a little tough, god love her

she's still workin' at it

and fightin' it

(good thing she's a fighter)

coming up on six weeks

2007-11-13T07:10:00.000-08:00

it's almost been 6 weeks

6 weeks in an ICU bed

6 weeks with tubes everywhere

6 weeks no food, no talking, no nothing

yet in these past 6 weeks

she's made such strides, come so far

touched so many hearts

and been the focus of so many fears and tears

and prayers and love

such an outpouring of concern and compassion

you've all been so loving and wonderful

and yet, she's been there, in that bed

for 6 weeks...

all night long

2007-11-12T16:36:00.001-08:00

all night

yes

she was off the ventilator and breathing on her own

-all through the night!

the nurse is very encouraged

she said she was on the computer

but i can't get her to email me

kids these days, teenagers

texting and im-ing and emailing her friends

(not dad)

i'm so happy she's able to do it and that the hospital

has a good wireless going for her apple

so she can do this...

that's all for today

next, i'm gonna talk about what the last six weeks have been like...

CarePages Update

2007-11-11T19:35:00.000-08:00

...FROM HER MOM

Another great day! Acacia walked down the hallway!
She was able to walk with the Respiratory Therapist walking with the oxygen,
Paul the nurse walked backwards holding onto Acacia and she
"pushed" him all the way down the hallway!
The doctors were all in the hallway everyone was cheering her on!

The doctors said they will never figure out what caused Acacia to crash,
and they really don't know what to attribute her turn around to,
but they are thrilled as am I. I don't care as long as it continues.

The plan now is to put her on a B-Pap machine to help her breathe tonight
with the trach mask, if she can do that for a few days and can continue to progress,
she will be able to go upstairs sometime next week!

Then in the next few weeks if all goes well they will attach a speaking valve to the trach,
and eventually try and downsize the trach so she can begin to eat.

Still a long road, but at least there has been sunshine these past two days.

another walking day

2007-11-11T08:53:00.000-08:00

the nurse said she's 'good' today

she's on her 'trach mask'

-breathing on her own, with her new lungs

she's gonna take another walk today

and the nurse is happy with her 'progress'

me too

thank christ!!

"doin' great"

2007-11-10T15:14:00.001-08:00

just got this text from her

'on the chair

doin' the mask

doin' great'

well what do you think of that!

good morning!

2007-11-10T09:15:00.000-08:00

her nurse said that it's a good morning

she's watchin' a movie with her mom

and feelin' good

-when they take fluids off, that really helps her

all the numbers are good

and she said she's smiling a lot

(that must be making the whole hospital brighter)

-o0h that smile...

there's a big auction for her tomorrow in colorado springs

-during the steelers game

and there's love and prayers coming in from new zealand

things are happening all over for my brave little girl

she's still fighting

breathing on her own, with no help from the ventilator

that's work

and she's workin' it

on her own, all day!

2007-11-09T15:12:00.000-08:00

her nurse told me she's been

on the 'trach mask' all day

from 8am to 5pm

-breathing on her own -with her new lungs

all day

this is good and lots of work

so, at the same time they gave her dialysis

and sucked out a liter of fluid from her blood

that combo is a full days work

she said they've just settled her down for the evening

and hopefully (as we always are) she'll get some rest

what a hard working fighter

she's trying so hard

and working so hard

and now god's taking it a little easier on her

for her, the battle continues!

the fight is on!

for the rest of us the fight is on -our knees

(keep saying your prayers, please!)

big thanks for the big event

2007-11-08T07:17:00.000-08:00

There are so many times, mainly late nights,

when I feel so alone in this battle that I face

-in the war that my daughter is facing.

But at the event last night at Smooth's,

I felt so encouraged and loved that I know this battle is being fought

-with an army full of people who care so deeply about

me, my daughter and just plain ol' people who need a hand.

The heart-felt love and sense of compassion was overwhelming.

The event for my daughter was not a success for the amount of cash that it raised

but for the out pouring of true love that it conveyed.

CarePage Update

2007-11-08T06:50:00.000-08:00

Acacia is trying her hardest to breathe on her own.
She did about 1 1/2 hours on the trach mask yesterday and 3 hours today.
They put another line into her g tube as her stomach can not handle anything
-so now the feeding goes right to her intestines, she still is nauseous and having other issues
-but it seems to be better.
They took her off the 24/7 dialysis and now she is on the three hour one three times a week.
They took the arterial catheter out of her leg last night,
which is another step in the right direction.

Compared to a week ago, things are so much better. Such a long road.
She asked again today on her chalk board about Christmas, and then started to cry.
It is all so overwhelming. I won't answer her as I don't want to disappoint her,
so we will take it a moment at a time.

Posted on November 7th from Acacia's CarePage Updates -Children's Hospital Boston

sweet, sweet music

2007-11-07T08:25:00.001-08:00

early this morning i took a chance and texted her

then my house filled with sweet music

the music of my sweet daughter's voice

'Smile, You've Got Mail'

over and over again

she said that she feels 'ok' and that she's on the mask

-that's the 'trach mask' that they are using to wean her

-having her breath on her own, without the ventilator

it's work, -work that must be done

she told me she's watching tv and 'chillin''

i told her about tonight's Big Event here in Long Beach

she said 'cool'

what else do teenagers say?

so, great

who needs nurses for details

when you've got a cell phone and a sweetheart

back-off, baby!

2007-11-06T19:10:00.001-08:00

this afternoon's report was good

her nurse said that she's

back-off of 24/7 dialysis

back-off the dual ventilator

back-off heavy sedation

back-off heavy pain medication

yeah!

and the x-ray of her problem

-the air trapped around her heart

'seems' to be dissapating (more)

so with this morning's texts

and this afternoon's report

..we can go into her big fundraiser tomorrow night

with a little more hope

and

as you know

hope is what we have

what a wonderful age we're in

2007-11-06T08:21:00.000-08:00

i was awakened this morning at 4am by acacia's voice

"Smile, You've Got Mail!"

-that's the sound my phone makes when i get a text

and (praise god) there was the message

'morning'

-from a medically induced coma to a text on a cell phone

ain't life great?

we text ed back and forth

she said she felt fine, but can't handle the feeding tube

i told her 'ya gotta eat'

i asked if she's getting skinny, she said 'yeahhh'

ya see, like her father (and his cars)

-she's always had trouble with a spare tire

so, (for this morning) 'she's wide awake'

i told her i loved her

and she did the same

-that's all i need

the wheel goes round and round

and (for right now anyway) we're at the top!

2007-11-05T14:37:00.000-08:00

a li'l better

2007-11-05T14:07:00.000-08:00

nothing's really different

i just called and everything's the same

other than her stomach feels a li'l better

and she's 'not so sedated' -yet comfortable

they still don't know what's going on with her

the nurse said they are just waiting to see if

the new lungs kick-in and start working by themselves

that sounds to me like it's time for more prayers

'resting comfortably'

2007-11-05T06:54:00.000-08:00

i think when they don't wanna talk to me

or they don't know what's going on

they tell me that she's 'resting comfortably'

this nurse this morning had no idea how to answer

my questions about acacia

she just keep saying 'i don't know'

and 'she's resting comfortably'

what they've done, (i'm fearing)

is just knock her out again

last night she was in distress and 'comfortable'

they don't know why she's having so many different problems

just

'her numbers are normal and she's resting comfortably'

i guess i should be thankful for that

i keep reminding myself -she's out of my hands

-she's in god almighty's hands

i'm really thankful for that

Anonymous has left a new comment on your post

I will lift up my eyes to the mountains; from whence shall my help come?
My help comes from the Lord who made heaven and earth.
He will not allow [her] foot to slip;
He who keeps [her] will not slumber.
Behold, He who keeps [Acacia] will neither slumber or sleep.

rough time

2007-11-04T17:41:00.000-08:00

she's anxious and her blood pressure is up

she's sick to her stomach and weak

she's not resting and uncomfortable

the nurse couldn't tell me too much more

because she had to go take care of her

she's having a very rough time of it

and they still don't know what exactly is happening

please keep her in your prayers

ask god to go a little easier on her

'headed in the right direction'

2007-11-04T09:29:00.000-08:00

that's how her nurse described her this morning

off sedation, gonna have her sit up in her chair

lowered her oxygen machine to '30'

he did say however that now there's some problem

with her digestive tract, but he wasn't concerned

-'we'll give her something to take care of that'

he said she's headed in the right direction

editor's note:

this is my 50th posting and after this much contact with these various nurses
i think i've come to the conclusion that you really never know what's happening

they are not gonna alarm me or admit that they've done anything wrong
or that their patient is in any pain or distress or danger

but me not being there and all i have to report is what they report to me

-that's how we get back to the question of 'how do we cope?'

we cope with hope

these things are obviously out of our hands
so we have to rely on somebody else to handle things
she's in good hands
and me, for one, i have hope

slight improvement

2007-11-03T09:38:00.000-07:00

is better than none

they hope to take the breathing tube

out of her mouth and throat

and replace the 'trach' tube

i like that, i hate that tube in her mouth

her numbers are still fine and she's still sedated

'slightly'

she's 'comfortable' and 'holding her own'

the biopsy showed "NO REJECTION" -that's great!

there is still air around her heart

but it's not effecting her heart function

and it 'may' have started to dissipate

overall: 'slight improvement'

in a long long road to recovery

no results / nothing new

2007-11-02T18:59:00.000-07:00

she had her CAT scan

there is still no results from

her surgery yesterday and her scan today

she's still heavily sedated and resting

her nurse told me she's doing ok

they are taking a lot of fluids from her

-she's on continuous dialysis -so that's good

and they were able to lower her settings on

her breathing machine -so that's good

and her 'numbers' are good -so that's good

also the air around her heart has not increased

so they 'think' that's good...

a lot of guessing and waiting and this is driving me

nuts!

good news ...and bad

2007-11-02T08:20:00.000-07:00

the good news is that they've taken that

big, double-wide vent tube out of her mouth

and replaced it with a smaller one

seems the issue of a 'collaped lung' has passed

she's oxygenating well and her numbers are good

the bad news is that her x-ray this morning revealed

air in the sack around her heart

it's not causing any trouble yet,

but they gotta fix it, air is escaping from somewhere

so today they'll do a CAT scan and more x-rays

to see what's wrong and also get the results from her surgery

big day for my little girl