Sunday, November 29, 2015

Week 3 Update: still here but maybe (?) some light at the end of the tunnel

Two days ago, we rolled three weeks of very unexpected stay.  So far, my girl has been here longer than most anticipated, had a chest tube put in, pulled out, and put back in, and made friends with just about everyone she can.

Oh yes.  And her dad can take "See your child have a seizure" off his bucket list.  Check that box.

She makes nothing easy.

Overall, her spirits are good, she still smiles a lot, giggles hilariously at times, orders people around, demands people look at her when she's talking, and acts like she runs the joint.  She's a three-year old CEO.

On the medical front, there is a heart cath coming early this week which will hopefully reveal something that we can fix.  That is hands-down the best option.  Option A, as I've been telling my friends.

The condition that is causing her problems is that the pressure in her circulatory systems is higher than in the lymph system.  That's important because the lymph system typically dumps its excess and some other stuff (a highly technical medical term, I know) into the circulatory system.  So if the pressure is too high in the one, the lymph system will back up and put its extra elsewhere - like a little girl's lung.

Option A, then, is there is something anatomic causing her circulatory system to carry higher pressures, and a stint / suture / cardiovascular magic will fix it and she will stabilize quickly.

There are other options, but let's stick with praying for Option A right now.  The others get pretty dicey pretty quickly.  Patience is not in high supply but it is in high demand.

So here's how to pray for our little Minion CEO...

1.  Pray we can get into the heart cath procedure quickly this week.  The more quickly we get this looked at, the more quickly we have answers.

2.  Pray it shows an easily fixed Option A.  That would be catching a divinely orchestrated break, one which we would frankly LOVE to catch.

3.  Pray she comes through all of that fine and isn't too messed up by the anesthesia.

4.  Ongoing strength, positive outlook, and mental toughness for her.  Heck, you can pray that for all of us.

5.  We have been blessed by so many in so many ways.  Please pray that God will pour out His blessings on those who have blessed us.  They have given of themselves without thought or seeking something in return.  So I'm asking God to pour out in ways that they never would've anticipated but will thoroughly enjoy.

Thanks for staying with us.  We are still in the fight.


  1. With you from afar. Praying God will work with OPTION A, or even an A+.