Sunday, June 2, 2013

A Bumpy Week

My Future's So Bright, I Have to Wear Shades
This is another one of those "Look How Much I've Grown" shots.  Wearing Daddy's sunglasses at an appointment when he was two months old, and then again last Sunday.  No, not the exact same sunglasses (they do get scratched, you know), but both pair fit Dad pretty much the same.

Well, this week's had it's share of speed bumps.  If you remember, last week Aaron had lab work that showed he was doing well on his reduced vent settings, so it was time to try to decrease them again.  Um, yeah, that one didn't go so well.

In the beginning, it looked pretty good.  He wasn't breathing faster, no more than the usual oxygen.  He was still needing Albuterol and Flovent for his asthma, but not that much.  In fact, I had spent some time on the phone with the trach/vent coordinator on Tuesday going over plans for the next six weeks.  We'll be taking some time to go to Bear Lake with family, and needed to make sure we had plans for everything.  He was looking really good.  Key word in that sentence:  was.

It takes about 24 hours for the lungs and body to adjust to new situations.  And then, if it's less support (altitude, oxygen, ability to process, whatever) the body works harder.  And sometimes, it gets tired.  Yep, about 8 o'clock on Tuesday night, Aaron's body decided that it was really hard to do this with less of the constant pressure (PEEP).  But I didn't know that was what it was because we've also got the asthma component.  Plus, he was working really hard on dirtying his diaper.  Face it, that can be really hard work!  The upshot of it all was, he wasn't able, even with the ventilator's help, to maintain his airway enough to sustain him. 

Let me tell you, there's nothing like having to bag your baby (force air in with a mask, the "P" for pulmonary, part of CPR) on 10 liters of oxygen to get your adrenaline going.  But I was also pretty okay with things, for a little while, anyway.  With the bag and oxygen, I was able to bring his sats back up.  It took a while to get him out of the very low 90's, (he'd been down in the high 70's to low 80's initially) but I knew that as long as he was sitting there, we weren't emergent.  Had he not tolerated that, or had he not been able to recover within a short period of time, well, that's another story.  But let's just say it would have involved a helicopter in the neighborhood again, and he's already had his turn.

So we got him taken care of and resting comfortably again, and back on the vent.  He repeated it again, although not quite as severely, the next morning.  That time he needed a ton of oxygen but was able to stay on the ventilator.  That's when I turned his PEEP back up to let him rest.  After 48 hours, I tried it again.  This time it was only about three hours before he was struggling again.  So, at least for the next several weeks, we're just going to let him rest and hang out.  We'll let his lungs get good and used to it, and we may start pulling him off again for a little while here and there, just letting him do all the work but for much shorter periods of time.   This marathon may just take a lot longer to train for.

Another bump, I'm hoping it's a nothing/minor one, is that his heart rate has been elevated the past few days.  On Thursday, I took him in because I thought he might have a urinary tract infection.  Nope, that looked good.  It might be his ears, but we usually get drainage and there's none.  He's a lot more restless than normal.  So who knows what's happening.  He's not telling.  But I did keep him home from church, and we're watching, closely.

He's got his third birthday coming up.  It's on the 13th, but Daddy and most of the kids are busy running a cub scout day camp that week, so we'll be celebrating on the 15th from 6:00 to 8:00 p.m.  We'd love to have anyone who wants to come by join us for cake and a balloon release.  Once again, as always, we are so grateful for all the faith and prayers that sustain us and Aaron.

“Water is fluid, soft & yielding but water will wear away rock, 
which is rigid and cannot yield ... what is soft is strong.”  
Lao Tzu

1 comment:

  1. Oh, the bag....... it's a love/hate thing isn't it? But Norah breathes so different from most kids, that I always want to do the bagging instead of someone else. Others don't bag her at a high enough rate, some don't realize that she NEEDS PEEP!!! But yeah, it isn't fun.

    Hopefully the HR is just a side effect of having his settings messed with. I hate the inc HR - with Norah it is typically one of her first signs that something is up - especially a persistent inc HR.

    I will let you know if we can make the party. With all the preparations for Norah to come home in the next couple of weeks, we might not make it. But I'll let you know! I know every day with Aaron is reason for celebration - but his third birthday is HUGE! Sending hugs and love as always!