Saturday, April 27, 2013

Wrong Way!

First of all, let me start by saying how grateful I am for family, both related by blood/marriage, and my special needs family.  Word went out last night that Aaron was really struggling, REALLY struggling, and messages of support and love just poured in.  I cannot express how much that means.

Here is what we know:

Aaron has been using too much oxygen.  Not super, super high, but higher than he usually is, and he didn't want to come down.  We're also not suctioning much of anything abnormal, no color, no plugs.  So no signs of his cold in that way.  His wheezes are pretty much gone, although sometimes his breath sounds are coarse, but he also can be clear.  And pulmonology is very happy with the way his x-rays look and his vent settings are.  His blood gasses which tell us how well the oxygen is being exchagned also look really good.  So what oxygen is getting down to the alveoli is being used.

I asked for a cardiology consult, feeling like the six liters of oxygen may be due to higher pulmonary pressures, where the blood vessels in the lungs are just too stiff and too tight to work well.  Cardiology didn't think so, so we compromised with if he was still at 6 liters on Monday morning, they would consult then, and we'd just sit tight over the weekend.  Um, once again, we forgot to ask Aaron what he thought.

Physical and occupational therapy came to see him at 2 p.m.  They had him sitting up and playing a piano.  He did seem to enjoy it.  His lungs, not so much.  He started desatting.  Not a whole lot, but into the high 80's.  He settled down at about eight liters about 5 p.m. and the nurse started paging the doctor.  Unfortunately, this was also at shift change for the attendings, so there was a bit of a lag and the a doc that didn't know him. 

At 5 p.m. his respiratory therapist came in to do his breathing treatment.  Most of the time, he's just been rolled side to side, but this time, he was sitting to make it easier to get the whole back.  And by the way, sitting for treatment isn't out of the ordinary, and usually he tollerates it well.  But he doesn't sit on his own yet, so sitting is hard work, even with some support.  Working hard when there's pulmonary hypertension involved?  Could be a problem.  And yep, it was.  He went to ten liters, and then 12. 

That earned him a pretty quick trip back downstairs to the PICU.  Shortly after we got here, he dropped back down to ten, and sometime during the night, he made his way to five, but now he's back on six.  But he's also resting, not working at all.  His breathing rate has been elevated, sometimes just a little, sometimes by more.  Heart rate has been pretty good, even after albuterol, these last few days. 

After thinking about it and talking to a respiratory therapist, the thought is that he had a pulmonary hypertensive crisis.  He has pulmonary hypertensive episodes from time to time, but those are easily managed with more oxygen and about ten minutes.  This was different as it took huge amounts of oxygen and he didn't come down for a long time.  Like, I went to bed about 10:30 and he was still on nine to ten liters at that time.

So we'll see what the rest of the day brings.  One of these days, I'll convince him that the play date is over and it's time to pack up the toys and head home.  In the meantime, I'm grateful for all the care that he's given, and all the prayers offered on his behalf. 

Quick update:
The team just rounded. They'll ask cardio to come in, we'll see what happens.  While six liters is a lot for him, he's not a candidate yet for some of the other interventions, like nitric oxide.  Where he's sitting right now, six liters, is about what the goal is for those who are already on nitric.  He would need to be much closer to needing 100%  oxygen in order for those kinds of things.  So in the meantime, they're probably sending us back upstairs, depending on how the floor team feels.  This just may be a long road as we let the oxygen do it's job of relaxing his blood vessels.  Rhinovirus just stinks.  "Just a cold" for him, is not "just a cold."  And yeah, if you've got a cold, you ARE sick.

Whether it's in the right way or sometimes the wrong way,
you learn about life and its lessons.
Amelie Mauresmo

1 comment:

  1. Dear Rebekah,
    I ache for you and your sweet little guy. Prayers ongoing. The smile in the previous post is priceless.