It was a long day. I feel pretty miserable, but I am getting my antibiotics on board now and should recover soon now (I hope). The PA I saw this morning said it was a sinus infection but my lungs sounded clear (for now!). She recommends 48 hours of drugs before I go see Brendan again.

Bill worked from home today but was really busy. He did manage to step away long enough to save me from having a melt down, taking Trevor so I could go have a nap. Fortunately Trevor decided to sleep too. When Bill was done with work, he was off to deliver Brendan his clean linens, visit his dad, do some shopping and other errands.

Trevor slept a lot today, but still shows no other sign of fever or illness.

Brendan’s doctor made my heart skip when he called me this afternoon. This is the same doctor that called me when Brendan had his crisis before, so when the number came up, my mind went every which way! Turns out, he was just calling me to update me on everything since I can’t be there. He hasn’t seen Brendan in weeks, and was pleased with him today!
His plan this week for Brendan is to sprint him off of the NAVA in a ventilator mode called auto mode with pressure support. It lets Brendan do all of the work and just gives him minimal support when he needs it. It gives his lungs the little positive pressure at the end of a breath to keep the weak areas open and prevent collapse.
If he does well, they will work up to longer and longer sessions of automode and then try him again on the home vent with similar settings.

I did not have energy for pictures today, and Bill did not have time at the hospital without his phone ringing, so there is little to share. Just this picture of Trevor and his nude time enjoying his evening bottle.