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....

ST. PATRICK'S DAY

Because I was not home for St. Patrick's Day today, I borrowed this picture from last year. LOVE THIS PICTURE! Makes me smile everytime. Oh the things I make Benjamin endure. Yesterday Ben came off the vent for a period of time - and it seemed as if he might just stay off...until night that is. It's hard work to keep his little airways from collapsing. He needed a break. Because his x-ray looked worse this morning (due to coming off the vent to early) they left him on it all day today. Tomorrow they will try again. He's looking good, I think he's finally healed from his infection, just battling some airway issues. We're looking at Thursday for the final decision for the LIFE FLIGHT. I'm still hoping that it'll work out....Happy St. Patrick's Day everyone! :)

MONDAY

Today we start looking into a "life flight" to get Benjamin back to NH. I haven't spoken to the discharge planner yet so I'll have to update about that later. Yesterday was a really busy day for Benny, he's on the vent and so they had to change his trach to a 'cuffed' trach. This prevents air from leaking up and out his mouth/nose. They had put a smaller cuffed trach in early Sunday morning because it is difficult to get in. He still had a significant leak and so they had to change him to a bigger one. Thankfully they gave him some sedation for this as it can be quite painful. It took two different respiratory therapists to get it in. He also has been struggling with some fevers, high heart rates and high blood pressure. The blood pressure issue is new for us. This morning they are holding his feeds because his sodium level is borderline dangerously low. They are switching him over to his IV and administering some normal saline and some glucose to hopefully bring the number up. As soon as I know about the life flight info, I'll let you know.

SUNDAY...

Sorry I didn't write yesterday, it was a busy...stressful day. Ben's oxygen needs were at 50% most of the day but as we got into the evening hours he started to decline pretty quickly. I was really frustrated at the resident that was on call because I told her repeatedly that Ben needed c-pap to help open his lungs. She seemed annoyed that I wouldn't leave it be and kept ordering "temporary" fixes hoping that I would drop it. I finally had to go over her head to the chief resident and even she was difficult. I told her that I felt like I was not being heard. Ben eventually needed 100% oxygen and even then he couldn't keep his sats above the mid 80's. She finally got Ben a bed down in the PICU and they were certainly happy to have us. His oxygen is down to 35% this morning and he finally looks like he is resting. They had to put him on the vent with pressure support and a rate. His x-ray showed improvement this morning. Not sure how long he'll have to be in the PICU but he's starting to look better already. Starting tomorrow we will be trying to get him a life flight back to Dartmouth - not sure if it will happen for sure, but we'll try anyway. I'll update more as I know.

OOPS!

I posted Ben's update on my other blog...I'm thinking that my brain doesn't work so well on sleep deprivation. These computers won't let me copy and paste and I'm too lazy/tired to type the whole thing over. So...if you are looking for his latest update, you can hop on over to our family blog. Thanks for playing!

Heaven Sent

Make a Smilebox scrapbook

THURSDAY

Last night was quite the night. After finally getting Ben to bed around 11pm I followed suit. An hour later I woke up to a resident doctor shaking my leg, "hell0? I need you to wake up...hello?". When I finally got my bearings, the resident proceeded to inform me that he was really concerned with Ben's blood pressure and heart rate. At first I wanted to roll my eyes and crawl back under the covers because Ben generally has low blood pressures and heart rates at night - it's just his thing. But...when I heard HOW low it was, I decided maybe I'll join in on the party in his room. They gave Ben 3 boluses of IV fluid within 30 minutes totaling 1000mls. They rubbed his face and spoke to him trying to wake him up. (I think he was rolling his eyes under his sleepy lids too) Cap gases and arterial blood were drawn, (that certainly got his attention) and the crash carts were brought in with drugs kept close by along with talks of art lines being put in that finally convinced Ben that maybe he should wake up and let them know that he was just fine. I was grateful for his quiet communication because it meant that the lights could finally go out again and that we both could continue our not-so-restful slumber that comes with being in the hospital. :)

NJ tubes = NO fun!

This is how I tucked Ben in tonight.

He's EXHAUSTED!

Thank goodness for soft,

cuddly friends to comfort him. :)

Wednesday Evening

Tonight Ben has finally started to settle down. It's been a LONG day of suctioning and coughing for his poor little body. I'm grateful that he is able to rest some at this point. He's still on 40% oxygen and his chest x-ray from earlier shows the pneumonia to be a little bigger than yesterday. They decided to place an NJ tube - which goes in his nose, past the stomach, straight into his small intestine - so that he could get some nutrition. They'll pursue a swallow study to see if he is aspirating before using his g-tube again. Hopefully we'll both be able to rest some tonight.

Wednesday...

Ben did NOT have a good night after I tucked him in. He started to need LOTS of suctioning and attention. He wasn't on any oxygen when we got up to his room and now he's needing about 40% or so. They have stopped his feeds wondering if he is aspirating - everything seemed to have happend after they started them. He isn't peeing well now even with lots of IV fluids. His secretions are COPIOUS! The nurses haven't left his room all night. They have ordered another chest x-ray to see if he's worse. His one from yesterday showed a lower left lobe focal pneumonia. They will probably look at his nissan to see if things are getting loose causing possible aspiration. That's all I know for now. I'll update when I know more.

Cozying in for the night...

Primary Children's Hospital

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