Taming the wild Trevor requires lots of water. I drove him around this morning, trying desperately to think of something new to do when it is still 100 degrees outside. Anything that came to mind was either too hot, too germy, or takes too much preparation. The mom’s club was meeting at a pizza place with a kids’ play zone but I just could not bring myself to go and face the exposure. Brendan is just getting healthy again and making some progress. I am still worried about our brief library experience and what kind of bugs he picked up.

The only thing I can do when I am out of ideas is to turn on the hose and stand outside and sweat my butt off. (If only that actually worked literally)

During trach care tonight, Brendan kept pulling off his HME and chewing it. So I capped his trach. I didn’t expect he would do as well as he did! He wore it for 45 minutes!!! That is a Brendan record. YAY BRENDAN!!!

He was having his evening power surge I guess, his oxygen is in his hand and he is breathing entirely through his nose/mouth and not through the trach.

We checked him over and over and with NO oxygen attached, he was still sitting at 83%.

He was being extra silly practicing his walking. Even more good news – Trevor tolerated Brendan’s crying, yelling, talking and laughing with only one small bout of sad crying. Maybe he is finally realizing that it is OK for Brendan to have a voice too.

“I’ve got no strings
To hold me down
To make me fret, or make me frown
I had strings
But now I’m free
There are no strings on me”

Unfortunately, his string-freedom was temporary. He gets his feeding tube, Pulse-ox, and vent hooked back up to go to bed. He is on 1.5L of oxygen now on the ventilator to maintain 80% and above. Funny how he needs more oxygen when he has a machine to help him breathe. He has been using 0.5-1.0L on his HME which is where he was before he got sick again. Back to baseline, finally. Time to move FORWARD again. Go go go BRENDAN!!