Tuesday, October 29, 2013

And the Bubble has Popped

Can I say, I HATE pulmonary hypertension?  I don't hate Trisomy 18.  Yeah, that may sound weird, but T18 has given us three-plus years with a perfect angel soul.  It has taught us so much.  But that darn PH, I'm having a hard time finding the joy in it.

Yep, we're back.  He's struggled more over the last week than I'd really like to see.  And things have been niggling the back of my mind for a little while, kinda like we were "cooking the frog" again.  A little higher on the oxygen needs, a little more trouble breathing when his head's not elevated.

And then there's been this last week.  Now, his demeanor has been pretty good!  He's had lots of smiles, happy, gone to school.  He has been more tired (yeah, see cooking the frog).  But here's the kicker.  I've bagged him three times in the past eight days, and had to use a rescue med four times.

So last night, when we bagged him to get him out of the mid-70's, and then he dropped back into the low 80's when we put him back on the vent, and then his rescue med only bought us another hour at six liters, I gave up and called for help.

And can I say, I am so grateful to be living in an age where we have the internet and online connections?  One of the medications he takes for his pulmonary hypertension is not widely used at all.  In fact, there is one pharmacy, back in Tennessee, that dispenses it.  And any time he's got a new med or anything happening, we need to call them.  So this morning, I called to ask about dosing information.  Guess what?  The pharmacist could tell me NOTHING about guidelines for prescribing for pediatric patients under 12 years.  It just hasn't been studied/used/whatever in that population.  But thanks to social media, I know of at least three moms whose kids, well under 12 years old, have used or are using it.  Yeah, I know Facebook is overused and there can be a lot of issues with it.  But when it comes to being able to connect with people who can bless your life, who you wouldn't even know about, it can literally be a lifesaver.

I'm so grateful we were able to take pictures last week.  Every fall, I drag out any child under 17 and make them take pictures with me.  (I figure once I've shelled out a fortune for senior pictures, they can be 17 forever, and are exempt from the yearly torture.)  I wish Aaron had smiled at the camera, but he was happy smiling everywhere else.  And the other boys had fun, too, once I pointed out that we could take pictures on the tire swing and they could climb on the bridge.  Here's a few of the very many pictures we took.  SOOOO incredibly grateful for good weather last week and that we took advantage of it.  

A good snapshot stops a moment from running away.  ~Eudora Welty


  1. Love him and thankful for your Facebook connections!

  2. I love that you got all those wonderful photos! I'm still praying for Aaron!