Tuesday, March 31, 2009

LOOKING GOOD...

Me? No, no, NO!
Thanks, but I wasn't talking about me.
I was talking about our chances.
The chances of being out before
(shhhhh.....I must be quiet when I tell you this)
Ben's birthday.
He'll be 7 on Saturday.
(just don't tell him)
He LOVES to be here for his birthday.
We'd rather celebrate at home.
No offense to the PICU.
To compromise, I told his nurses and doctors
we'll celebrate HERE on Thursday
with some CARROT CAKE!
Then we can celebrate his REAL birthday at home.
His update is that he is on a rate of 5, peep of 6.
(I know...means nothing to most people, just know it's good news)
They will continue to wean him down.
Everything else is holding steady.
Let the countdown begin!
Because...
It's LOOKING GOOD!

Monday, March 30, 2009

20 DAYS

(Ben's favorite nurse)
That's how long this admission has been.
Ben is still on the same vent settings,
they started him on another antibiotic,
and some new seizure medications.

We still have a few more days ahead of us.I feel energized and Ben feels refreshed.
(he received a spa treatment today from
his favorite nurse AMY!)
I know that we'll be out of here soon!
(fingers and toes crossed)

My dad came up to keep me company. He came armed with his scrabble board. It's a favorite past time of ours. The games can get really competitive. Neither one of us are good losers. I lost the first game and quit the second. I blame it on sleep exhaustion. :)

Sunday, March 29, 2009

UPDATE ON BEN

This boy is TIRED!
That's what happens when you go on road trips at midnight. Dr. Filiano sent Ben for a CAT scan last night due to some seizure activity the last couple of days. It was quite the process as he is hooked up to a vent, oxygen, a monitor, feeding pump, etc. I'll find out later today what they saw. He has been peeing a lot too. They can't seem to figure out why. All of his labs look normal. They always chalk stuff like that up to his neurological issues. The good news is that they went down just a smidge on his PEEP settings. (on the vent) It's a step in the right direction. His x-ray looked good on those settings as of last night. I'm sure if it continues to look good, Dr. Filiano will continue to wean him down.

Saturday, March 28, 2009

GOOD TO SEE YOU...

dear brother of mine.
I've missed your kissable cheeks...
Love you lots! xoxo Stevie

Friday, March 27, 2009

THE NEXT AMERICAN IDOL

video

Making his "Singing Debut",
I present to you:
Benjamin Orton
(I credit all vocals to his dad)
Enjoy! :)
(bonus points if you can 'name that tune')

Thursday, March 26, 2009

ISSUES

Today's issues are:
-high blood pressure
-anemia
(notice the white boy above)
-collapsed lung
Questions?

Tuesday, March 24, 2009

THE LONG FLIGHT HOME...

Primary Children's Hospital
The MED FLIGHT comes for Ben...
It takes a team to move Ben and all his equipment.
Ben's looking a little worried....
Into the hands of the MED FLIGHT crew.
His PICU nurse making him comfortable.
Saying good bye to all the great nurses and doctors.
Say HELLO to the LEER JET!
Loading our stuff on...
Loading Ben on...
Goodbye Utah.

(can I change my mind about going???)
...cuz it was TIGHT quarters in there.
Not much working space.
Five hours later (with one fuel stop) we made it to NH.
Out he comes!
We are relieved to be here.
Dartmouth's PICU - our home away from home. :)
Nurses attending to Ben.
We made it. It was a LONG day. My stomach is a LOT queasy from the bumpy ride. I remembered from last time why I did NOT like the MED FLIGHT. The crew was great, the food was fantastic...I'm just not a fan of really, really tight quarters. BUT, I am SO happy to be here.

Monday, March 23, 2009

GOING HOME...

Today I received the news that I have been
praying for all weekend. We are FLYING HOME!
Tomorrow MED FLIGHT will be taking us to
Dartmouth, NH. It's not home, but it's darn
close. I have have really enjoyed my time here,
as hard as it was to be away from family. I
have been so blessed with the kindness of
family and friends. How do I say thank you?

I will especially miss my twin. Hard for me not
to cry as I sit here and type this. We have SO
much fun together. I have been thinking about
yesterday and how he stayed with me for hours.
We LAUGHED and LAUGHED some more. I was
actually feeling a little guilty that we were
having so much fun in the PICU, but we did it
anyway. I love his family and have enjoyed being
here with them. Thanks for hosting me. :)

I loved getting to know Haley and was smitten.
I am grateful that she warmed up to me quickly.
I'm thankful for all the visits that Ben and his
family made to see us. I am sad that I don't have
any pictures of Joy, but grateful that she has
been there, for whatever I needed. I'll miss you.
These pictures are from the Pedi Floor, when
Ben's children could come visit. They are more
strict about visitors in the PICU. I LOVE the
way that their children LOVE my son.
I have been touched.

I can't tell you how excited I am to be flying home.
But I can't help be a little emotional at the same time.
I will miss all the great people of Utah. Don't worry,
we'll be back. And for the record Jenny...my shirts are
CLEAN! :)

Sunday, March 22, 2009

ERIN

This is Erin.
(Erin on the left with her sister)
We met about two years ago...online.
She has a daughter with special needs.
I never got to meet Erin until now. My
regret is that I never got to meet her
sweet Charlotte. You see...she passed
away about 4 weeks ago, in the very
PICU that she visits me at. I have
learned SO much from her.
She is an answered prayer. I can say
that I love her dearly and that I
am more blessed for knowing her.

Thank you Erin, for your inspiration.
(you can read more about her daughter at:
booferd.blogspot.com)

Thank you for being
a much needed friend.

MORE VISITS...

This is Aunt Suzanne.
(Steve's sister)
She loves her little nephew.

She always brings him cute friends.

She got to see Ben getting
his "Vest Therapy".
Ben seemed extra brave.
He didn't want to worry his Aunt.
We feel SO blessed to have
so many people who love us
visit often. Many of the nurses
here have said: "For someone
who lives as far away as you do...
you sure are inudated with visitors."
We ARE so lucky. Thank you Aunt S.

Friday, March 20, 2009

A DEAR FRIEND....

This is April. She understands what it's like to
have a child in the PICU.
She can't visit us much
because her son isn't portable.

But she makes sure that Ben
knows he is loved.

Whether in person
or through a cheery gift.
She was able to come up
a few nights ago.
To bring Ben an early birthday gift.
(Ben told me to put the ribbon
on his head, I promise.)
He got his very first BYU apparel!
Hat and all. :)
Thankyou sweet April,
for your love and friendship.
(and thank you for uploading these pictures for me)

A SPECIAL VISIT...

...from a special witness.
Elder L. Tom Perry visits with Ben.