Back in the Clink

Yep, we're BAAAAck.  We got about a 48 hour reprieve where he was doing well.  Then Wednesday night/Thursday morning, he started acting up again.  This time was a bit different than it has been.

When asleep (read "TOTALLY relaxed") he did great, like, one to two liters great.  When he was awake and active, well, not so much.  He wanted somewhere between five and eight liters.  Plus, the part that really bothered me was that he would have these sudden desats.  He would drop down to the low 80's, not for very long, but for the space of about two to three heartbeats.  I would love to blame it on bad readings, but he had great wave patterns and double checking it with capillary refill also correlated.  They were real.  And it was probably those heartbeats.  He did this ten to 15 times a day for Thursday and Friday, more when he was tired, less right after he woke up.  Can we say "pulmonary hypertension?"

Yeah, he's showing every sign of shunting un-oxygenated blood from the right side of his heart over to the left side where it then circulates through his body.  I was on the phone yesterday with both the Trach Ninja and cardiology.  Neither of them were real impressed.  And when the first was telling me that it was possible that maybe it was the extra humidity that's coming through the new vent, but that she wouldn't put her eggs in that basket, let's just say it ratcheted up my anxiety a bit more.

So after I spent all afternoon with a pit in my stomach, last night we loaded him up and brought him north.  The good news is that we came under our own power.  Yeah, no ambulance in front of our house last night.  He's been admitted to the floor where we're watching, for now.  What we know:  his x-ray from last night looks just like Aaron, some patchiness but nothing out of the ordinary for him.  He continues to need large amounts of oxygen.  He's currently on six liters and was steady there all night, even when sleeping.  He also continues to have the random desats.  His blood gas shows that his CO2 (what we breathe of, what drives our breathing) is actually a bit low for him.  We're watching that to see if it continues to trend downward.  If that's factoring in, it's a relatively simple fix.  We just need to adjust his vent.  To do that we'll have to go to the PICU, but whatever.  That answer would be my preference.

If it's not the vent, if he continues to struggle like this, we'll try to meet in conference with both pulmonology and cardiology, hopefully on Monday.  I don't know what comes next for treating his PH, but they're pretty big guns from what the cardio fellow was telling me last night.  We'll probably want a heart cath before doing them just to help make sure that's what he really needs.

Another fun thought (really, I mean it, much better than worsening PH with no explanation) would be if he was coming down with something.  As much as I hate it when he's sick, it's a reasonable thing for his PH to go up when he is and then it comes back down as he recovers.  But he's not symptomatic at all, so we don't think that's it.

So please keep Aaron in your prayers.  Please pray that his lungs will relax and that his heart and pulmonary vessels will recover.  Pray that we can find answers and that they'll be ones that we can all live with, especially Aaron.

Faith is what makes life bearable, 

with all its tragedies and ambiguities 

and sudden, startling joys.  

~Madeleine L'Engle