Sunday, July 19, 2015

Trying Again...

Now that we've got some of our biggies (family reunion and SOFT conference) behind us, it's time to bite the bullet, face some fears, and try again.

Friday, we even went and got a clean bill regarding his biannual cancer screenings.  So yeah, here we go.

I was reminded during our cardio consult that if Aaron could get off the vent and breathe on his own, his lung pressures would improve.  Even an hour a day would be beneficial.   The ventilator, just by forcing the air in, increases pulmonary pressures, and actually works exactly opposite the way our bodies are designed.

You can skip this section if you already know, or really don't care.  But I've had enough people ask, that I figure it's worth going into.  See, when we breathe, exhaling is active, inhaling is passive.  It takes pressure from the diaphragm to breathe out.  When the diaphragm relaxes, we breathe in.  For vent dependent people, the ventilator pushes the air in, and then when it stops pushing, they breathe out.  And that pressure as the air goes in, causes more pressure on the blood vessels in the lungs, pressure that they normally wouldn't have.  It makes them more resistant over time, stiffer, (sounding like what you've been told about high blood pressure?).

Anyway, here's my challenge, and I recognize that it is my challenge, not Aaron's:

Every time we've made significant progress in weaning from the vent, he's caught a cold.  Yes, I realize that correlation doesn't equal causation (i.e. the wean doesn't cause the virus), but still....

It's hard to get excited about trying something that has always been followed by 7-14 days in the hospital, fighting for life.

On the other hand, if he can get this, it will improve his life, his quality of life and his length of life.  So I decided to seize the opportunity and try.

We tried 15 minutes at first, and he rocked it!  Then 30 minutes the next day.  Last night, I decided to see just how long he could go.  And to make it even more fun, we put his speaking valve on.

That works as a one-way valve.  He can breathe in through it, but to breathe out, he has to push the air up past his trach and out through his nose and mouth.  Even more challenging.

Friday evening breathing on his own.

ONE HOUR!!!!  That kid made it a full hour on that speaking valve!  We're doing it again this morning. I've raised the sat alarm (measures the amount of oxygen, or saturation of oxygen in the blood) and lowered his pulse alarm so that we have plenty of warning when he just starts to tire.  The only time the sat alarm has gone off is when he disconnects his oxygen, and his pulse only reached 120 (really, totally fine) yesterday after an hour.

This morning, we're at at and hour and a half right now, and showing no signs of distress at all.

Maybe, just maybe, he will be strong enough to spend some time every day like this.  It would be such a blessing, in so many ways.

Here's hoping...

With ordinary talent and extraordinary perseverance, all things are attainable. ~Thomas Foxwell Buxton


  1. How exciting! I hope you continue to have luck with the speaking valve! We just started PMV trials this weekend with my daughter- I think she would tolerate a short trial ok but she keeps taking it off!

  2. Yay! That is wonderful! Go Aaron!