Wednesday, September 30, 2009

PICU Day 8

BUSTED!
My cute nurse caught me...
I was waiting ALL day for Benny to wake up.
But by 3:30pm I just couldn't keep my eyes open anymore.
Ben must have sensed my lack of awareness and woke up.
Figures...
*****
Ben was weaned two more numbers today on his vent.
That left lung isn't liking it too much.
I keep reminding Ben to breathe...
breathe DEEP!

Monday, September 28, 2009

PICU Day 7

These pictures are from ROUNDS the other day.
(before we moved to our bigger room)
It's the highlight of my day.
We get to talk about Ben and
make decisions about his care and treatment.
Today's BIG NEWS?
We are weaning Ben's Pressure Support.
(from 14 to 12)
That's a step in the right direction.
Hooray for progress! :)

PICU Day 6

LOOK!
Balloons from Caleb
and a fluffy friend from Hunter!
Thankyou for thinking of us!
We love you dearly.
No progress made on the vent today.
His lungs are wheezy and down.
Ben's starting to get cozy here...

They even moved us to a bigger room.
I'm grateful!
(but it's not exactly a great sign.)

Sunday, September 27, 2009

PICU Day 5

One step forward...two steps back.
Today Ben had another fever.
He just isn't feeling that great.
They sent all new cultures again:
blood
urine
trach
His PS has been weaned the last couple of days.
They didn't touch it today because he just didn't look good.
Tonight they have increased his PS back up.
His lungs are wheezy and he's not moving great air.
More nebulizer treatments.
He's just plum tired.
So am I.
He was nice enough to share his bed with me this afternoon.
I snuck in for a long, cozy nap.
The good news?
His oxygen is only at 30% and he's holding!
GO BEN!

Saturday, September 26, 2009

PICU Day 4

I slipped home last night for a quick visit with my family. Ben was holding his own so I felt comfortable enough to do so. They have been weaning his vent settings yesterday and today so he is making steady progress. I came back today and a couple hours later he spikes a fever. It's his way of telling me that he's mad for being left behind. Sorry Ben. I promised him that if he would hurry and get better, we could BOTH sneak away. He's thinking about it...

Friday, September 25, 2009

PICU Day 3

PICC line is IN!
The nurses are doing a happy dance!!
(and so am I)

No big changes today...
lungs still sound JUNKY!
Antibiotics switched over to IV.
He's down just a smidge on his O2's,
and vent settings are the same.
Here's hoping to a non-eventful day.

Thursday, September 24, 2009

PICU Day 2

I woke up this morning to more respiratory distress coming from Ben. His lungs sounded like a washing machine with a side of wheezing. He spiked a fever last night and this morning. The doctor went up on his vent settings and oxygen to support him more. Ben seemed to respond well to the increased support as he settled down fairly soon after the changes were made. Tomorrow morning he is scheduled for a PICC line placement. Because of his worsened condition, they feel he will have need for a reliable line as this might be a lengthy stay.
BATH DAY! :)
This picture makes me laugh. He hasn't slept much in the last couple of days so he is TIRED. I needed to give him a bath and kept waiting for him to wake up. Since he's refusing to wake up today, I went ahead and decided to bathe him anyway. He was sound asleep through the whole bath, silly boy.

Wednesday, September 23, 2009

PICU Day 1

Ben's had a really, really hard night/morning.
He has been struggling to breathe and so they put him on the vent.
The problem?
He needed a larger sized CUFFED trach.
Ben typically has a 4.5 uncuffed trach.
The only size that keeps him from leaking on the vent
is a 5.0 cuffed trach.
The PICU crew spent ALL morning trying to get it in.
I finally had to leave because it was AWFUL!
Eventually they did get it in and
what a difference in his breathing.
He finally is able to take a break from working so hard.
That's the beautiful thing about the vent.
BALLOONS!
Ben and I were SO excited to receive these cute balloons!
Thank you dear friend for lifting my spirits.
Hopefully now Ben can rest and recover
because he is WIPED!


Sunday, September 20, 2009

Come visit us...

...over at Kidz!
(I'll be posting here every once in awhile)
Becky
Ben's mom
I am the lucky mother of four amazing children (two in each flavor) and wife to my soul mate who makes me laugh every single day. Our youngest child was born with a very little brain, but incidentally seems to teach us more than we could ever reciprocate. I am very fortunate to be able to stay home with him and be his caregiver. He communicates by showing unconditional love. Benjamin is my constant sidekick and makes my life complete! Aside from mothering, laundering, toilet scrubbing and chauffeuring I LOVE to eat fresh fruit, play basketball, read a good book and organize my closets. I enjoy playing the piano, a good scrabble game, holding newborns, learning new things and filling my home with freshly baked goodies. Being home with family is my favorite place to be. I choose to be happy and relish finding joy in my journey.

Saturday, September 19, 2009

Ben's First NASCAR Race

Thanks to Make-A-Wish and our VIP,
we got to enjoy a Saturday at the NH Speedway.

We were lucky enough to be inside a suite,
where it was quiet...and warm,
with unlimited beverages and food.

Ben LOVED watching the races...
and the cool crashes.

Thanks for a great family day Make-A-Wish!

Thursday, September 17, 2009

More Eye Excitement

video

More video of Ben's crazy eye movements.
More seizure medication.
More visits to the neurologist.
More reasons to squeeze him.
More reasons to kiss him.
More reasons to LOVE HIM!

video

Here's some video WITHOUT his eye movements.
Cute, huh?

Tuesday, September 15, 2009

He Follows...

...wherever I go,
without complaint...

...he loves me so.

Saturday, September 12, 2009

Ben's Bed

Ever been away from your bed for a LONG time?
Ben has.
And he missed it.
I tucked him in,
gave him some smooches...
and 5 minutes later he was OUT!

Too bad it didn't last all night...
I think he missed ME more than his bed.
(we visited quite a lot in the dark hours)

Friday, September 11, 2009

The EAGLE has LANDED...(for good!)


Ben is HOME!
My life is complete!

Monday, September 7, 2009

Portland Headlight

While we were camping in Vermont...
Ben headed to Maine.
On the way back to NH today,
B.B. took him to a beautiful spot
near the ocean.
It's called Portland Headlight.
He had a great time
and the weather was perfect
for their little outing.
Thanks B.B for taking
such GREAT care of Ben!