6.9.10 - Beads of Courage

Liam was a wild man all afternoon...the nurse said he is metabolizing his sedation medications very quickly, so they are not lasting very long. He keeps waking up and thrashing around, which is not good for him right now with the tube in. SO, I've been manning his bedside trying to keep him calm most of the afternoon...He also fought his way through the respiratory treatment this afternoon. He didn't respond very well to it...It has been an exhausting afternoon!

Plus, we are also waiting on poop. Sorry to bring it up again, but unfortunately its causing some issues...again. He has already been given some Miralax and 2 "bottom pills" and still nothing. My heart breaks for him...the more time we spend here, the more helpless I feel to help him and make him feel comfortable. I think the hospital setting is really starting to wear on me...

Good news is I promised a post on a new program that MC started with their heart children so here it is! The program is called Beads of Courage, and a lot of hospitals participate in the program. It initially started as a program for cancer patients, but they developed one for cardiac kids. Liam will get a bead for every thing he goes through for his heart condition. From a I.V. stick to intubation to heart surgery, they have special beads for all kinds of procedures and milestones.

And each time he experienced something, he gets a bead. The surgeons assistant, Kathy, started Liam's bead chain for us already and caught us up through this surgery. Here is picture of Liam's beads of courage:

Of course, we have also earned a few additional beads since we have been here =), so they give you a sheet to track things on so when you visit your cardiologist, they can give you your beads. It's a great program to have something tangible for when Liam is older to visibly show, besides his scars, what all he has been through. I think it will be very special for him as a keepsake.

I'll end tonight with some snapshots from the hospital...these were taken Monday I think...

family time

Had to catch this cute pic of Liam and monkey....monkey has been very useful in many ways here, especially good at holding up the vent tube =)