Sunday, August 31, 2014

home

we are home.

exhausted.

but home.

The plan in the beginning was:
Tuesday 19 - invasive probe/grid surgery
Tuesday 26 - removal of the epileptic portion of the brain surgery
go home 2 days later........

David stayed in the ICU longer than they expected because of complications from the first surgery.
However because he had so many seizures giving them the evidence they needed, the surgeon moved his surgery up to the 22nd (Friday)
***side note:  I am so exhausted.  if this is not eloquently put nor making sense... I apologize.  it is what it is.

Looking back....
That was a blessing of huge proportions.

My mom was able to be "me" almost the entire hospital stay - we would still be in the hospital had the surgery not been moved up.  This past Friday (the day after my mom left) would have been THE day from hell...  which actually happened on Monday.

I am so grateful to be done with that part of this trial.

We are home....
and that in itself is a great blessing.

David rests a lot - and has kept his pain at bay for the most part.

He's not quite back to being himself, but every now and then a glimpse of that shines through his serious thoughtful persona he's holding onto for the moment.

Tonight we were all sitting around the dinner table discussing his amazing hair cut and stitch work he's got going on - wondering why we didn't put this off until October around Halloween.  He would have made the perfect Frankenstein or Emo .... (isn't that what the "all dressed in black w/ piercings galore" teens are called today?)
(I feel it's alright to post this photo --- since this is our kiddo now, and he's not afraid of showing this new addition to his tough-guy scar collection)


His swelling has gone down to almost non-existent and he's feeling so much better.  His eye sight is a little off, seeing double which is to be expected.

He took a bath.
(this is huge.  my smell radar can only take so much... and I think he loved being clean since he's asked twice since then if he could take another, and another....)

He's walking up the stairs by himself.
sleeping through the night.
eating really well.
(does anyone else feel like I'm talking about a toddler?)

He has been through a firestorm.

He has had so many people praying for him and our family through all of this.
I've had some dear friends ask me if I have felt their prayers.
I'm trying.
I'm so numb to what just went on in my son's life.
in our lives.

but miracles have also taken place.
I know this.

this procedure, in and of itself, is a complete miracle.
modern day science is a miracle.

I'll post pictures once I get his permission.
I haven't shown him the photos yet of his hospital stay, I'm not sure he is mentally ready to visit that yet.... nor am I ready to rehash it for him.

@ the suggestion of our bishop, Mike and I read Ether 12 tonight:
this was for meant more for me - I believe....
because although I hope, I'm too reluctant in my faith @ the moment....
I'm afraid to get my hopes up too high
afraid of disappointment
of sorrow
of sadness
but I'm working it.
i need to believe & have faith in miracles....

 And now, I, Moroni, would speak somewhat concerning these things; I would show unto the world that faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith.


Wednesday, August 27, 2014

3 easy thing

1.  Last night was a replay of David's first year of life --- night and days flip flopped

2.  IV pain meds rock --- I'd totally not over use them if they would send some home with us.  Just to get out of here!

3.  They just gave Dave 3 things he has to be able to conquer before he can go home.
Eat
Sleep
Poop

.......they seriously just told me that

We've got some work ahead of us.


Tuesday, August 26, 2014

Some days are better than others

Yesterday

I thought I couldn't go on

Our stay has been exceptional - my guy has had tremendous care.
Today
We got "that" nurse.
The one that started out average
Then
Anxiously packed us up to ship us out
Out of ICU

Where we were immediately bombarded
We had a revolving door of residents   Doctors.   Students.   Nurses.

All of which asked me to reiterate David's medical history. His reason for this stay. How he's doing now compared to day 1 of surgery.  One of them having his current medical situation mixed with his cancer 20 years ago.....

As the last group of 3 talked over each other ..... Or so it seemed .... I almost broke down.
I won't go into details of what was going on
Only that - 6 hours after an excruciating moment
We were given a practically knelt down apology for a mishap and lack of care
All on the day of my worst mental state of being

This
While
In my darkest moment
A friend showed up
And just sat with me
And cried with and for me

As I was telling her
My frustrations with all the "substitute doctors"
The only 2 I wanted to see and hear from
Quietly   Calmly.
Showed up.

Never have they been there at the same time
However in a moment of my mental darkness
Their calming presence cleared some of the chaotic noise clouding my senses
Reassuring me that they are there for my son.
Reminding me kindly to take care of myself and family
To be patient
David's situation is quite rare
And will take extra healing time.

Later that night
After sticking around To deal with the on site floor doc
My Mike sent me on my way

Where my friend from the day
Helped me receive a blessing from a member of our bishopric
Then sent me home to be with my mom and two youngins
Where we discussed David.  Faith.  Hope.  Prayer.  And blessings.

Feeling at last relaxed
I went to sleep
While my poor mike
Was up almost all night
Caring for our son.

He is a good man.  Father.  And husband.

Today brought new calmness
My daughter asked if she could spend a day
Helping her mom tend her brother
And on this day
David was restful
Though pain was his enemy today
Seizures.  Nausea.  And swelling had subsided for now.

This post was more about the other side of the situation
We are all starting to see it take it's toll on us
But have seen miracles
Have been loved
Have had many serve us with out question.

I hope this ends soon.
David Mike and I are all ready to be home.

Monday, August 25, 2014

This was a long weekend.

Friday was the resection surgery.  I sat on the rooftop garden on the cool 76 degree Phoenix summer day --- it is never that cool in Arizona during the month of August.

I had posted on Friday what the day was like however I hid it from viewers.  It's too much right now.  Maybe I'll put it back on the blog as the days become easier but for now my entire being is in a state of numbness.

Mike stayed with him Saturday night so I could attend church with my mom and the 2 kids on Sunday.  We sat thru the first hour - however my need to get out of there overpowered me and we left so we could join mike and Dave at the hospital.

As I finished packing my "who knows how much longer we will be there" bag I ran thru my emails and started laughing.  Even tho we are numb and stressed beyond belief my Mike still keeps me laughing:

My Mike:  1:15 am.....
     There won't be much sleeping tonight.  Now he "needs" to go to the bathroom every 15 minutes and I just looked up and happened to catch him trying to pull the gauze off of his head.  Man. I hope this is the worst night.

My Mike:   Re. 1:15 am.....
     3am now and apparently his kidneys and bladder are working fine......;)
He just wants to get himself out of bed every time...... That's a problem.

I love that my Mike can still make me laugh even when a thick blanket of stress is covering our entire souls.

I stayed with the remaining part of yesterday. He had a young nurse who, at first I believed was just not kind, however she got him out of bed in a chair for an hour.  He was more alert later in the day and even held his own cup to drink, ate some food, and used his arms to position his body.  By nightfall he was sleeping like... My old David.

I miss my David tremendously.  Who would have thought id miss non stop talking and off the wall jokes?  I'm ready to have him back.

After being spoiled with the most amazing nurses on the planet (next to my sister Annie) we have a mediocre one today.  Which is fine.  Maybe it's that extra  push we need to move on.  Tho I don't think I need a push.   Maybe they don't like working with older kiddos??? Tho he's not a kiddo.  Or they like getting new patients.  .???....  Our current nurse came in and in a slight snarky attitude let us know that we were outa here because she was getting a new patient.  Ahhhhhh.....  If only I was a witchy woman. And if only my sons care wasn't still in her hands.

Dave walked for 5 minutes today.  Ate a small bit of French toast this am and had some high calorie juice.  He crashed after taking a walk and sitting up.  He's been asleep now for close to 2 hours.  He hasn't been this calm for a long long time.

The nurse took off his head badage leaving his stitches exposed.  He will look great!  He's a tough guy. He's got nice looking scar in the making.

He's got a long road ahead still. He's a little concerned about some things but his desire to go home outweighs everything now.

And yes....his kidneys are rockin.  Still going strong. Every 2-4 hours.  Which is a lot from mr 12 hour bladder control.


Wednesday, August 20, 2014

Day 2

5 long seizures today.

That's a good sign.

First thing this morning - because this is a teaching floor - misc residents were checking on us.  Asking questions. Making educated responses -- it's all in the learning curve of things.

Today has been a quiet whirlwind.  David wakes up often but only for a few moments.  I'm afraid to leave the room - he wakes in pain, or full of nausea.  Five times today he jolted awake suddenly, makes a slight head turn and that's when I know - I'm on.  I watch his hands closely making sure that he isn't pulling at chords while his longer than normal seizures take action.

-----I started this post over an hour ago however had to set it aside ------

The whirlwind approach: this morning Dave had a CT scan - the probes are all appropriately placed however from his previous surgery 20 yrs ago - the brain itself had attached to his skull.  When they opened up his head there was a little bleeding.  This was to be expected.
This afternoon a female doc working with the neurosurgeon came in and began telling the above story then said "unfortunately...."   Her phone then rang and she rushed out to answer the call

Ummmmmm......   That's not a good place to stop a conversation while in the hospital!

She came back a bit later with the neurosurgeon who explained that from this -  in the area where he has a bit of scar tissue from his previous surgery there is still some hemorrhaging. .  They will need to keep a close eye and when they do the brain resection surgery they will take care of the scar tissue area situation.

As we speak, the nightly ICU doc is standing I front of our room with about 5 residents discussing Dave's  history.  Sometimes I feel the urge to go out there and join in on the party in the hallway.  Then I remember I probably have bad breath and funky hair and might get kicked back into my room. ;)

As our night nurse was in and out taking vitals - a male in hospital scrubs came bursting in my room. With his cell covering one ear he abruptly asked if Dave has ever taken some medication I'd never heard of. I explained this to me - which he abruptly replied with the name brand.  I.  Have.  No.  Idea.  Who he is.  What the med is.  And why he's asking me this.  He leaves and our nurse trails in.  Laughing a bit she asks what that was all about - I respond with a "who was that guy?"   Ahhhh.  The night ICU doc.  

David's  neurologists have been watching his seizure activity all night.  Apparently he's having a ton of seizures.  He orders new drugs to stop his seizures (thus the above question from mr bursting into our room) and informed us that because they are getting such great readings from the probes the docs will meet tomorrow to discuss moving up Dave's surgery.  That.  Is great news.

David sent out a heartfelt video to his dad and siblings.  Sending his love and asking them to please. Please  pray for him.  What a brave kiddo.  He feels like crap.  Looks like Rocky got him alone in the ring.  But has more faith in prayer than anyone I know.

Ps.  His nurse is super cute tonight.  I wonder if he even pays attention to that. ;)

Tuesday, August 19, 2014

Small update sans photos - I don't have my computer and my phone isn't cooperating so I'll have to post photos later.

David is doing well.

We began the day at 4am - getting here at 5:20.  After a small scare with insurance we were admitted an hour later and pushed right on thru.  The surgeon met with us where he gave small details and words of comfort and reassurance.  He then let Dave know he failed out of barber school and then decided to become a brain surgeon. However he said he'd have to give Dave one of the best hair cuts of his life --- He had an MRI then was prepped and carted away for the next aprox 5 hours

Probes were placed on his brain in a grid like fashion.  Because of scar tissue the process of getting in there took a little longer but all went as well as planned.  We were taken to a consult room and filled in on the procedure - and an hour later we finally got to see the mummified dave who was pale as a ghost but sleeping like a baby.  The nurse started going over detailed then proceeded to have us a small Baggie of Dave's hair with a post it stating to make sure his parents got the bag-o-hair.  Dave and pudge always tease Mike that they will keep saving their hair clippings for a nice full wig some day.  It was a last little dave poke at his dad --- he got the last word in.

He has been out of it most of the day - waking only occasionally to dry heave, throw up, or ask for pain meds.  He's a tough kiddo.

The nurses have been fantastic, as well as the docs.  Last night before heading off to bed I ha a message from the surgeons nurse making sure we were doin ok and another from the anesthesiologist making sure that we were okay, while adding words of comfort and support.

David's face may swell up quite a bit in the next couple of days, however he isn't swelling as much as they had anticipated - which is good news.

Thank you for the texts.  Emails.  Kind words. Etc.  We are so blessed right now with amazing docs. Nurses. Family.  Friends. Etc....

I'll post a couple pics on my Instagram for now.
Sorry for the short choppy note.  I'm exhausted - and if I'm fully honest, my texting skills aren't up to my daughters standards.  So if your bored feel free to play spot the mess up or spot the swear word - those sometimes accidentally get involved in my miss-texting escapades!

Love to all
Me


Friday, July 18, 2014

 credit: Brook Andreoli
.... i have been gifted
with friends
who have amazing talents
such as capturing
this 
dream-scape

some days
what i wouldn't give to lay here
and read. 
just. read.

in a lovely summer dress
my mike unmoving by my side
the children
softly in the distance
conversing - joyfully

silence
only the sound of the rustling leaves
to calm my thoughts
and still my restlessness
....................

“My life feels like a book left out on the porch, and the wind blows the pages faster and faster, turning always toward a new chapter faster than I can stop to read it.” 
― Nancy E. TurnerThese Is My Words


school begins on Monday.

chaos will ensue.
but somehow
they will be
leaving me wanting ..... 

waiting for their rushed voices
their anxious approach
to return home
stilling my restless heart.

at this moment
while my plans are on pause
they
these children of mine
are 
my purpose
my happiness
my life



Monday, June 9, 2014

& on to the next thing

....Richard G. Scott

20 years ago we were playing with a fussy baby
ignorant of the pending future awaiting us

needless to say
we were immature 
--- extremely naive ---
in our parental knowledge and what would lie ahead

after years of seemingly prolonged medical stepping stones
we have suddenly found ourselves thrust onto a fast moving train

today we got the test results

with out going into detail
what we thought/ what previous physicians had supposed
was not.

what decisions we make 
today
will impact this one child's life
for ever.

all i keep falling back to
is the path that led us back here.
the people that have been put on our path
that have become more than family
they have become a beacon of hope and light
they have helped strengthen my faith
they have buoyed me up
at times when
my inner soul has begun to sink into despair

medical technology is extraordinary!
our team here is phenomenal
they are cautious
they are honest
more importantly
they are understanding

however....
the question remains 
for me
for mike
for David
do we have the faith
the will
the knowledge
to hop on that awaiting train
and thrust forward
knowing....
that things can get really 
horribly
worse
changing our family for 
forever

OR
life as we know it
will cease
& my son's brain
and daily function
will be reborn.

last month he was set apart as a Service Missionary
it was done in a very informal manner
yet the experience was ceremonial for him
& that is what matters right now in this period of his life.
i often, especially as of late, take photos
then come to the realization that
A: i am aging at a rapid pace
B: that outfit was way cuter in the mirror than in this photo
C: time for new hair
D: i'm very short.......

other important factors in our decision making process
are our 2 younger ones
who continue on
but have been a great support
living in the unknown
but knowing that something will change
they
are a blessing in our lives
 i don't know if i posted prom
but here is prom for this gal & her friend Zack
 they were darling
it was fun for her to go with a friend
they had an amazing time together
and she looked gorgeous!

 (happy mom moment... she even let me fix her make-up.  she hates make-up... i may have been super excited)



 






and our little guy
he is 
a firecracker!






Thursday, June 5, 2014



Sunday i may have had a bit of a panic episode.
we would be heading back to the hospital
for an unknown amount of time
not more than a week
not less than 2 days.
unknown.

memories of spending most my life
in hospital 
with this guy came flooding back
making me anxious
remembering the prison walls that held us close

this time hasn't been too bad
much easier than chasing around a toddler
pulling around a pole taller than I
with hanging bags of poisonous meds 
leaking into his body

more like a 40 ft. long chord
attached to probes
cemented to his scalp
under a fancy white gauze cap.
he looks.... well.  
not comfy.

day one thru 3
Dave was able to have full access to all things electronic
he. 
was.
in.
heaven.

and..
it worked like a charm....

9 seizures by the end of day 3.

along the way 
we had a PET test
 this cute girl took us down
 this chatty lady was the sweetest technician ever
and kept reminding me that now was my chance
to get some good photos
to use as collateral some day...

we did a lot of reading
& watching DVD's
(even tho the hospital had movies like (hot) Thor and (smoking) Superman
streaming all day long....  apparently the studs of Mythbusters are more entertaining to watch.
(or not.....)



June 4th 
was this guys #20
in hospital of course

my sweet friend Michelle 
& her awesome guy Austin
brought David a balloon bouquet 
along w/ 2 GIANT chocolate bars

and later that night
after hours of 
Neuro Psych testing

uncle Brent
Grandma & Papa
along w/
Syd & Pudge
came to celebrate the big day...
of which I have never seen my guy
not excited about a birthday.
this has been an odd birthday
to say the least...





Mike & i even searched high and low
for a simple cheese cake...
he wanted nothing to do with it.

after they partay
david perked up enough to complete his
neuro psych testing hw
while i roamed the room 
taking photos for entertainment

 the "eye in the sky"
tapes his every move
and every word/noise
.... he's a star!

my hero Mike was able to stay every night
but last
so i camped out on the couch/bed
woke up super early to get this day going
............. and then ............
the day didn't get going
nor did the MRI happen as schedule
nor did the doc come in early
nada.

so the mood went from excited
to aggrivation
to --- frustration
to --- utter giving in
in the matter of 20 minutes.
especially when the nurse came in 
letting us know that the MRI had been moved to 4
instead of early in the am..... 

so after i forced David to have 
AT LEAST a bowl of cereal

i ate a small bag of cereal from home
downed my excedrine/motrin combo
heart burn meds
and ate this for my breakfast 
because ....  
i wanted to do something wild.
j/k.

poor dave.
he is down and quiet today.
even the nurse said, 
"he's REALLY quiet.  is he ok?  he is always like this?"

...... uh.  no. 
not in the slightest.

so.
here's to hoping.
hoping to go home.
today.
even if it's dark out.
today.
for dave.
and the family.












Tuesday, April 8, 2014

you & me are more than friends... we're like a small gang:

these 2 gems came to me
"photo shoot time!"

I gently reminded them
"i am NOT a photographer"

obviously....
that didn't matter

I.
love.
 their.
 sisterhood.



















the main purpose of this trip
Syd + Jo = MORP w/other gender BFF
where....
our shyness came out....
& posing didn't come as natural
however... w/ my spectacular photography skills
I DID manage to get my dear friend Marja & her guy in EVERY photo...
cuz that's how good I am!
so while all the coy-ness & shy-ness was coming about
@ least on the female end...
these 2 boys?
they were pure entertainment
I loved being around these kiddos....
miss daughter?
her thoughts?

Mom... go away
Mom... stop taking pics.
Mom... he's my bff.... so, stop. it. now.
this daughter o mine
has amazing friends
from different back grounds
different "cliques"
different states
different styles
&
she amazes me with her determination to LOVE someone for the inside
not the outside
tho these kids...
pretty freaking adorable if you ask me.