SamBeller.org

Friday, March 16, 2001

Waiting for Sam to Come Home

We are playing the waiting game.

At the moment, there are several possible criteria to use to decide when he can come home. Much of it they leave to our comfort level… Here are the items.

1. We’ve ordered a new tracheostomy tube that will serve to protect his airway from nasal secretions while we are allowing his sinus infection/impaction to heal. We may wait until it arrives, but have no idea when that will be. This would not force us to stay in ICU.

2. We are waiting for his course of IV antibiotics to finish. One finishes tomorrow. So on that criteria, we could bring him home tomorrow.

3. Home nursing staffing availability. We have found from experience that attempting to come home on a weekend doesn’t work because we cannot get the agency to staff the case quickly enough. This is sufficient reason for us to stay in ICU until next week.

4. Sam continues to require a large amount of supplemental oxygen, four liters to be specific. Ordinarily, he requires zero and can do fine with what the respiratory folks call “room air.” For some reason, he still needs a lot of extra O-s. This in itself could make the stay longer.

Frankly we are stressed because the hospital stay is wearing us down. But on the other hand, having it all at home again and being responsible for the whole package in the aftermath of hospital stay is also very challenging. It’s odd. When he’s up there, we all get exhausted, more each day. Then he comes home and the routine is heightened and we’re actually doing more work at the very time we need the most rest. Eventually we settle in to the routine; he gets better; we get rested. Sorry I’m speaking so candidly, but it is the reality of the situation.

Prayers are definitely in order for Ursula. She has stayed at the hospital every night so that my work schedule would not get too interrupted. She is very tired.

Also pray for our Jacob. He gets so very sad during these stays when he gets shipped off to strange homes and can’t see his Mom and Dad. The other morning, he whimpered to me, “Daddy, I don’t want to go with her,” and put his head on my shoulder. Jake needs a break.

- David Beller