Tuesday, July 30, 2013

Waiting Games

Still in our holding pattern here.  After sleeping all day yesterday, he was only awake from about 2:00 to 6:00 a.m.  William reminded me this morning that he's been known to do this before.  He'll sleep almost constantly for a day or two and then be awake constantly for the next two days.  Oh, I can't say how much I hope that's what he's gearing up for. In fact, I told his doc this morning that what I was really hoping for was a big ol' IM (intramuscular, like most immunizations) shot into his thigh that would just fix everything.  He agreed, that would be nice.

Right now, at this moment, he's actually down on his oxygen to about where he should be.  Last night, even when asleep, he was needing about seven liters.  This morning he was really struggling.  For those who understand ventilators, his PIPs were high, his respiratory rate was high, and his oxygen needs shot up to 9 liters.  I"m sorry, I just don't have it in me to try to explain all that, but it wasn't a particularly good thing.

We gave albuterol, just to see if it would help.  It probably did.  He started coughing and we were able to pull a lot of junk out of his lungs and work him back down to five liters of oxygen.  Pulmonology was here at that time (there's three trach/vent kiddos on our four-room pod right now) and stopped in.  It's been quite a while since his last bronchoscopy, so they've asked the ENT team to take a look and probably get a bronch.
What they'll be looking for is the possibility of some tissue having grown and started obstructing his airway.  That would actually be very welcome news.  I don't know that it could explain all the recent instability, but it would at least influence it.  And that's a fixable thing.

Yeah, we're grasping at straws here.  But every once in a while, the straw has held weight.  He's scheduled for his heart cath tomorrow.  We won't know what time until this evening, but it can't come soon enough.  Please keep our little one in your prayers.  He needs a miracle, yes, another one.

“And now we step to the rhythm of miracles.” 
― Aberjhani 


  1. Oh I just feel so tense reading this and thinking about little Aaron and how you must feel! Not very encouraging, huh? But remember our God is perfect and all powerful. I am praying His healing touch on Aaron - and a miracle on his heart. Hugs!

  2. I know you don't know me, but your blog has helped me so much in the last six months with our baby girl. I've been thinking about and praying for you guys. I hope you receive good news soon.