Once Upon A Prayer

Friday, November 29, 2013


Jacques and I make a fantastic team!  Jacques is determined to not allow Lily to become a "cardiac cripple", and he typically takes on the "suck it up princess" role.  I, on the other hand, am very in tune to Lily, and can often be found carrying her up and down the stairs at home when I feel like she's at her limit...when Papa is not looking of course!  On Monday while I was at work, Jacques texted me several times expressing that something was wrong with Lily but he couldn't put his finger on it.  Lily wouldn't play, and couldn't walk without bursting into tears.  Although I was a bit concerned, I was the one who thought we should give it one more day in case she was just recovering from hospital psychosis since she was just discharged on Saturday night.  Jacques texted me on Tuesday and told me to call Lily's cardiologist.  The text said, "Never have I seen Lily this lethargic or lackluser.  It seems like it takes a lot of energy for her to simply smile.  Please call Dr. Frank now."  

Bright and early Wednesday morning Lily and I headed to the Cardiac Clinic in Washington DC.  The team did a full work up on Lily, and we were there the entire day.  At 4pm, the results of Lily's blood panel came back and I was informed that Lily had Hyponatremia.  Hyponatremia is an electrolyte disturbance in which the sodium in the plasma becomes lower than normal.  Lily's sodium level was so low and dangerous that she was immediately admitted to the Cardiac Intensive Care Unit.   When sodium levels in the blood become excessively low, excess water enters the brain cells and the cells swell.  The result can be seizures, coma, and even death.

An IV was placed, and a sodium drip was started.  The doctors checked Lily's sodium levels regularly since a rapid increase in sodium can be just as dangerous.  Over the next 24 hours Lily's levels went up and down, but clearly she was feeling MUCH better!

Nurse Lee gave Lily his Magical Name Badge that opens all of the 
doors on the CICU.  Here Lily is checking out the
Equipment Storage Room!

Since this was an impromptu hospital stay, 
I didn't have my bag of tricks with me.
Have no fear, Nurse Lee is here!!!
Arterial Line, Med Line, Heparin, and Morphine 
stickers can be oh so much fun!

Our family was together in the CICU for Thanksgiving!  
Here the "bigs" were treating Mackenzie.
They gave her oxygen, placed a 'straw' IV, and bandaged her shot.
I am so glad that all of my girls have Papa's GREAT
imagination...these girl's will go places...mark my words!

Will the real Lily Grace please stand up?

Many people have asked me how this hyponatremia happened to Lily.  The doctors believe it is a combination of the massive amounts of diuretics that Lily needs in order to battle the fluid from her Protein Losing Enteropathy, and the fact that she had the "common cold" over the past two weeks.  In order to get Lily's sodium up, the team decided to hold her Lasix, one of her three diuretics.  Unfortunately, Lily is now supper puffy and retaining fluids.  She received a dose of IV Lasix last night, and a dose of IV Diuril today but she still remains very puffy.  Lily has been transferred to the Heart and Kidney Unit, where they are trying to find a balance between keeping her sodium up and keeping her puffiness down.  This is proving to be very difficult right now.

So, in the meantime, Lily has eaten 8, yes EIGHT, bags of these
chips since Wednesday night.  I'm a bit jealous.

My heart has been heavy the past few days as I desperately longed to not spend another Thanksgiving in the hospital.  My focus has been on how fortunate we are to have heeded Jacques' gut feeling since this could have ended a whole lot worse.  I pray that God uses these difficult situations for me to learn the secret of being content in any and every situation.

I know what it is to be in need, 
and I know what it is to have plenty. 
I have learned the secret of being content 
in any and every situation, 
whether well fed or hungry, 
whether living in plenty or in want.
Philippians 4:12


  1. Continuing to pray for all of you. Sending hugs your way.

  2. Love your heart. Love your precious daughter. Love your love for Jesus. Love chimichangas. Whoops sorry, that was a typo. Love that you are holding on tightly to the One who created that sweet, sweet girl. Love that my spell check keeps wanting to autocorrect the word "chimichanga" to the word "Michigan." Love that you can buy a chimichanga in Michigan. Love that I now need to go Google whether you CAN actually buy a chimichanga in Michigan. Love that you live no where near Michigan but that now you know that should you ever go there a chimichanga purchase is possible......maybe....I'll get back to you. Love that you are still reading this. Love that it has brought a smile to your face. Love that it doesn't matter if it's a good smile or if it's one of those, "This lady is whack" type smiles. Love that either way I could give that to you because my heart breaks for how much you want your family all together snuggled up on the couch and hey, a smile is a smile. Whether eats eating a chimichanga in Michigan, or a waffle in Washington. Love you sweet friend!

  3. Such a beautiful girl, such a beautiful family, such a beautiful mother's heart. Give Lily a hug from her CICU friend on the west coast, and from our entire family.