Dr. Martinez called me this afternoon circa 2:30p with today’s update on Gene.

The frustrating part is that we are still dealing with some of the same obstacles.

Gene continues to produce very thick respiratory secretions, and he is still requiring sedation because when they reduce it, he becomes extremely agitated, uncomfortable, and difficult to manage safely.

That creates the same Catch-22 we have been dealing with.

They need him awake enough to begin proving that he can breathe without relying on the ventilator. But when they bring him out of sedation, his agitation becomes severe enough that they have to sedate him again.

So they are taking it slowly.

The team is lowering his sedation a little more each day, with a very specific goal now: they would like to have Gene completely off sedation by the end of this week.

That would give them a much clearer picture of where he truly stands neurologically and, just as importantly, what his lungs can do when sedation is no longer suppressing his ability to breathe on his own.

There is also one genuinely good piece of news.

His tracheostomy is healing nicely, and there are no signs of infection.

Considering how vulnerable Gene has been to infections, that matters.

Nutrition, however, remains one of the central problems.

As we learned previously, Gene has extensive blood clots throughout the right side, which is unfortunately also the side the doctors would normally need for dependable IV access. That has made finding a stable route for medications and nutritional support extremely difficult.

Today, though, the team found another possibility.

A surgeon evaluated Gene and believes they can bypass the problem by placing another central venous catheter, or central line, through the opposite side of his neck.

In plain English, they may have found another doorway.

The new line would give the doctors more reliable vascular access and, importantly, another route through which Gene can receive nutritional support while the larger feeding problem is being worked out.

At 5:43 this evening, one of Gene’s nurses called me for formal consent to proceed with the central-line placement.

I gave consent.

So Gene is still very sick. The ventilator, secretions, sedation, blood clots, and nutrition remain intertwined in ways that make every step harder than it ought to be.

But today was not static.

His trach is healing without infection. They are steadily bringing the sedation down. There is now a concrete goal of getting him completely off sedation by the end of the week.

And when one route for nutrition was blocked, the team found another one worth trying.

Thank you for taking the time to read this. 

Alexa