Thursday, April 30, 2009

17 days later....

If you had asked me in the beginning of this illness that we would STILL be in the PICU - I would have told you that you were CRAZY! I had no idea how long it has been until rounds this morning with the doctor and team. Someone mentioned that this was Ben's 17th hospital day and most of us in the room gasped in surprise. Has it really been that long? And 17 days is THIS hospital stay. The last one was 26 days long. We still have a couple more days here. Ben has been weaned down to minimal settings and right now they have him completely on C-PAP, still on the vent, but it's just C-PAP. That's a good move towards getting off the vent. They will put him back on Pressure Support tonight and then tomorrow at 6am they will take away the pressure support, leaving him on C-PAP again. Hopefully by rounds (around 10am) they'll put him on trach collar. It he does well on his trach collar for 24 hours, we'll be able to leave. He's off all of his antibiotics as of Monday and he looks more like the healthy Ben. Stevie is with us for the remainder of our stay since this is her vacation week. It will feel SO good to be back together again this coming weekend. We can't WAIT!

Saturday, April 25, 2009

Ben's Trim...

Ben's hair hasn't been cut since before March. We've sort of been busy...with all kinds of illnesses. I love his hair during all of it's phases...except for long sideburns. I like him to look clean cut. They were bugging me today so I took some really dull, pathetic scissors and went to work. Ben thanked me.

It'll do until I can get him some hair help.

LOOK how cute this boy is.

Big news of the day is a new departure date of Monday the 27th. Six weeks of hospital is just WAY too long. It feels like we never were really home. Kind of a figment of our imagination. We have big plans this week. Lots of day trips with the family. We can't wait!

Tuesday, April 21, 2009


I apologize for my delay in updating Ben's condition. You can take it as a good sign. He's making progress - at a snails pace - but it's progress none-the-less. Even though RSV is a virus and there are no antibiotics to treat it, they have him on 3 different antibiotics because of what grew out from his trach cultures. He just has been sicker this time around. By being on these antibiotics they are also hoping to prevent a 'secondary infection' on top of the RSV. His vent settings have been the highest ever so we might be looking at another couple of weeks here, depending on how Ben progresses. I stand in awe of his determination to fight. I can see it in his big, blue eyes. He never ceases to amaze me. This beautiful child is my hero.

Sunday, April 19, 2009

Friday, April 17, 2009

Big Brother Sleepover!

Kaleb's in town!
Brother's NEED to be TOGETHER! :)


Look what came today!
Thank you dear friend, for making me smile. :)

Wednesday, April 15, 2009

Still Fighting...

It was a rough day.
Found out Ben was RSV positive.
Not a good diagnosis for him.
He spiked another 104 degree fever.
He was pouring snot from mouth, nose and trach.
Lots of coughing and suctioning.
The doctors think he might have a secondary infection
due to the high fevers.
The next couple of days will be rough.
They are starting him on Vancomyacin,
along with his Ciprofloxin.
Hopefully it will cover any bacterial infection
that is secondary to the RSV.
Right now Ben is resting comfortably.
I'll update more tomorrow...

Tuesday, April 14, 2009

Back in the PICU

8 days.
8 glorious days.
That's how many days we were home.
He was never 100%.
Yesterday I knew in my heart
that he was sick...AGAIN!
This morning he had 104 fever.
Lots of secretions.
Even more coughing.
And even MORE oxygen.
Off to the ER we went.
Dartmouth sent the limo,
Ben's their VIP.
And here we are.
He's back on the vent.
His fevers are still spiking.
He is just plain miserable.
(until he got some morphine)
Now he's finally resting.
I'm off to bed...I'll write more tomorrow.

Saturday, April 4, 2009


On his 7th birthday!
(he's worn out from his BIG day)
Even better?
Ben's off the VENT!!!

Friday, April 3, 2009

LIFE... better with friends!

Wednesday, April 1, 2009

Are You Kidding Me?

If Ben could talk...
that's what he would be saying.
(just look at his face)
We were making such BIG strides,
but his lung decided to play a joke.
The x-ray looks worse today,
more collapse.
No more weaning until further notice.
I wish I could say April Fool's Day...
but apparently his lung beat me to it!
(darn it)