Home again, Home again, Jiggity-jig

Hanging out in the Emergency
Room with his IV, snoozing away.

 

Welllll, that e-mail I mentioned in the last post generated some calls.  The concern was that it might be his heart instead of his lungs.  I kind of wondered, too.  So I put in a call to cardiology. 

Now, I haven't always had the best of luck in getting return calls from them.   But in their defense, most of my calls have been about meds that needed to be refilled, etc, and it's usually taken care of, but it takes a day or two.  Um, not this time.

I put in the call mid-afternoon.  Within about an hour, I had a nurse wanting to make sure she had everything straight before talking to the cardiologist.  And shortly after that, she was calling back and saying we needed to make a trip up north, to the Emergency Room for evaluation.  Yep, fun times. 

But really, when I sat down and looked at everything, I wasn't surprised.  I was more surprised that I hadn't acted sooner.  Here's what I found:

• I can't tell if his feet are puffy, they always are.  I think they still look the same.  His hands and face are not puffy.  (Puffiness is a sign of fluid retention, and that the heart/lungs may be getting overloaded).
• His lungs sound pretty normal, for him.  I did give albuterol in the morning for the first time in a few months, just to see if it would help.  It didn't change anything.
• No fevers, no secretions.  Actually acting pretty good.  He's vocalizing a LOT around his trach even with the cuff inflated.
• About 2 liters higher overall on his O2 requirements.
• Higher needs and more unstable when he's really tired or working, like in his stander.
• Better when he's sleeping.
• Has more work of breathing overall.
• Needs his head elevated, but not much.  If I put him down, he drops to 88-90 sats, but still acts fine.  Raising his head again brings him back up.  This actually was the biggie.
• Off his vent trials.  We were doing 3x a day 3 hours through Dec, dropped to twice a day in January, and now have had to discontinue them all together.
• Except for the decline in vent trials, everything else has come on over the last 7-10 days.

So what does this all mean?  Good question.  It could mean his pulmonary hypertension is worsening, thus the request that we come up for evaluation.  It could mean he's getting sick.  It could mean he's just being a monkey and messing with mama!  We're all hoping for the last one.  Wouldn't be the first, or the last time, a child led me on a wild goose chase.

So, given that he was stable, we had dinner, Family Home Evening (subject was prayer), and loaded him up.  On our way before 7:30 p.m.

Up at the hospital they were wonderful, but it was a very long wait.  A scalp IV, labs, x-rays done, and things were looking pretty good.  There was a challenge getting an echo done, but a kind cardiologist fellow got out of her nice warm bed and came to do that for us, too.  And everything panned out pretty good.  Good enough that we didn't stay.

Did you get that?  WE DIDN'T STAY!  It is the first time we have gone to the ER for something besides needing a stitch or two to stop a bleeder, or replace a feeding tube (yeah, only 2 weeks with a n-j tube prior to surgery, and he still had to rip it out.  That can only be placed by a radiologist) where we weren't admitted. 

We do have to go up early Friday morning for a follow-up with cardiology.  And we'll also be getting a blood gas drawn to measure his oxygen and carbon dioxide levels in his blood.  I can't believe I forgot to ask for that.  It's kinda my standard measuring stick for him, and it's so simple.  But yeah, it didn't cross my mind until we were on the way home.  And we were NOT going back for that.  No way. 

So we pulled in about 2:30 a.m.  Can I tell you, the streets of Salt Lake are EMPTY at that hour of the night.  At one point, I was a little disoriented and not sure where I was.  Then I realized that about the only time I'm ever on Foothill Boulevard, it's very heavy traffic.  I'm not sure I saw five cars on it the whole way. 

We got everything tucked in and taken care of here.  Bless our nurse, it was also her last night as she's leaving for a job in the NICU at the University of Utah, she also came in at 2:30.  We are really going to miss her.  So I did manage to get a little nap before all the alarms started going off at 5:45, but oh, was morning painful. 

Today has kind of passed in a bit of a blur.  Aaron seems to be doing okay.  He's still higher on his oxygen, but not quite as much.  He still won't lie flat.  And tonight I started sucking out some pretty thick, sticky boogers from his nose (too much info?).  So it may be that the "sick" is what it's all about.  But we'll just keep on keeping on.  'Cause life goes on, and we're so glad that it does.

“And now we step to the rhythm of miracles."

― Aberjhani