Tuesday, November 26, 2013

Stupid Pulmonary Hypertension

Well, we did it!  He made the jump to his home vent and even made it to the floor.  But the floor part was a bit dicey, and still is a tiny bit.

When I woke up this morning, a resident who doesn't know us well (yet) asked if I wanted the floor or home 'cause he was only on 5 liters. That would have been great to go home, except our parameters are three liters or less for 24 hours.  And those are in place precisely because of what's happening now.

By 10:00 a.m. when she came to say we had a bed assigned on the floor, he was awake and needing 12 liters.  Yeah, our home concentrator doesn't even GO to 12 liters.  By 11:30, his assigned time for transfer, he had managed to get back down to 8-9 liters, so we came on up. 

Since then, he's sat between 9 and 12 pretty consistently.  At this very moment, he's using 15 liters, the maximum for the hospital meter.  I'm sticking pretty close to his room and it won't surprise me at all if we end up having to bag him out of a pulmonary hypertensive crisis.  (In other words, he's going to need some significant intervention to open up his lungs and keep the blood flow processing correctly.)  But as long as it works fairly quickly when we do AND it lasts when we put him back on the vent, we should be able to stay on the floor. 

And once he goes to sleep, we should be able to turn his oxygen down and give ourselves more wiggle room.  So here we go.  Pulmonary hypertension has reared his ugly head again, right on schedule.  Yuck.

It's not easy taking my problems one at a time when they refuse to get in line. ~Ashleigh Brilliant


  1. Have you asked Dr. Day for a consult yet? Now would be an excellent time. I know you may not want to hurt the feelers of your other cardio, but Day is who you should be seeing now. And I say this only out of experience and love. I even told Day that I was trying to steer you his way, so he won't be surprised. Just tell him Parker's Mama sent you. :D

  2. Yeah, he's been consulted as have others. But while it's a pain, and it's keeping us here, there's actually not much more that they can do for it. If it gets worse with this, they'll put him on the hospital vent and nitric. But for long term, they're doing all that can be done for him right now from what Dr. Day told us last time. It's just that every time he gets rhino, it kicks in at the end for a while before subsiding again. (Does this make sense? The brain is a bit tired and fried right now.)

  3. Thinking of you and wishing all the pains and niggles away - here is to a very very speedy recovery for your precious little boy