Night Time

47 BEATS PER MINUTE

I find it interesting that Ben's heart rate is SO low.

At times I get nervous about it.

Most people do NOT run this low.
Usually it's the marathon runners

that are in really, really good shape.

I just tell them that Ben's running his own

RESPIRATORY MARATHON...

That should qualify him, right?

Nighty Night my sweet Ben...sleep tight!

Draper Temple Open House

While we were in Utah,

Ben and his family

took us to see the

Draper Temple Open House.

It was BEAUTIFUL!

Ben and his beautiful family!

Me and my twin!
Little did we know that the next
day we would be admitted to the hospital

Nurse Stevie

No hesitation...

Stevie's back in her element.

The nurses have seen her in motion,

and promised her a job in 10 years.

Grandparent's are GREAT!

(need I say more?)

Ben's Lungs

Couple of issues today.

This is an x-ray (above) from about 2 years ago. If you look at Ben's lungs, you can see that they are both pretty clear. This is what they look like when he is healthy. There was a reason for Dr. Filiano bringing this old x-ray in for me to see besides the clarity of his lungs.
If you look at THIS x-ray, taken yesterday, you can see Ben's left lung (which technically is the right side of the picture) is completely white. That means there is NO air movement happening on that side due to collapse. I already knew this, there was no surprise. What he really wanted to show me was the curvature of Ben's spine. (check out the two x-rays and look at both spines.) In two years it has gotten progressively worse. He's leaning to the left significantly. What he wanted me to know is this will continue to worsen over time to the point where his left lung will be severely compromised. The only way to fix it would be spine surgery (which he wasn't suggesting, just informing me) or possibly a brace. It's basically a "no-win" situation. The surgery is NOT a good surgery to begin with, but to put someone like Ben through it would not be good. It's a MAJOR procedure. I'm aware of these situations, but they are hard to swallow when you are FORCED to see them because it's reality. I sat there with Dr. Filiano, teary, as I told him I'm just not ready. You never will be was his reply. How true that is.

GREAT NEWS!

We're leaving on a JET PLANE!

Don't know when we'll be back again.

(but you can count on it!)

We'll miss the great care here at

Primary Children's Hospital, but

know that DHMC is just as great.

We feel blessed to have been here.

But look forward to going home!

THE BEAR HUGGER

The LIGHTS are gone...

but replaced by the Bear Hugger. :)

This is a GREAT warming device.

The lights made it hard for both of us to sleep.

It felt like daytime 24/7.

My smart nurse brought in the Bear Hugger instead.

It's a lightweight plastic type blanket

that has warm air blown into it.

Keeps Ben nice and warm,

and allows mom some good sleep at night.

GONE TO BERMUDA...

(under the sun lamps)

If you can't get to Bermuda...

Bring Bermuda to YOU!
Ben's temperatures have been
pretty hypothermic...
so they have resorted to bringing
in the lamps to warm his
little body up.
(on a more discouraging note...the expedited appeal has been post-poned until Monday due to a lack of urgency on their part. We will continue to wait and hold our breath hoping that the insurance company will take pity on us and help us get back home.)

VEST THERAPY

I LOVE this piece of equipment.

It's made a huge difference for Ben.

In 24 hours, his chest x-ray is

SO much better.

He gets to vibrate in his vest

every 4 hours.

I tell him it's time to go

"off roading" again.

He seems to not mind it so much.

I think it does tucker him out though.

He often lets the vent breathe for him

after he's had a workout with his vest.

Still no word on his LIFE FLIGHT.
I spent all day working on an
"expedited appeal"
to hopefully change their minds.

WEDNESDAY...March 18, 2009

This morning Ben's x-ray looked worse than yesterday. His left lung is completely down and so they went UP on his vent settings which means NO trial off the vent which means our chances of getting a LIFE FLIGHT out of here are really good. They also scheduled him every 4 hours to get some 'vest therapy' where they vibrate the heck out of his little lungs to help move the gunk out. (he wears a black vest hooked to a machine) More later....