Her World Just Got Smaller.

 Our little mystery girl is trying to shake things up.
And it may or may not be making her Momma worry.
A. Lot.
The Pulmonologist told us to start the oxygen 24/7 through the weekend 
to see if we could get that wild heart rate down.
So we started at 12PM yesterday.
And her heart rate went from 145-160 down to 95-100.
And stayed there.
Nary an alarm was heard for the entire day.

 I'm not going to pretend that I didn't just hold her and cry.
For relief that her heart was settling down.
And for the sheer sadness that it appears that she has taken another step down.
And tears for all this means for all of us.
Oxygen tanks.
Fear of one exploding.
Traveling with cords all over her body.
Sleepless nights.
Wondering how she will ever get out of her wheelchair.
Wishing she could roll on the floor with her sisters.
Not knowing how to make this normal.
Wishing it was a bad dream.
Knowing it isn't.


 And then we decided to take the plunge.
We have a day full of  necessary errands today.
Learning to schlepp tummy food, pulse ox toe glow and an oxygen tank
with 3 other children and crazy holiday shoppers
in T@rget is the way to learn.
So we are venturing out.
Making it normal.
When it seems anything but normal.

And because this sweet girl likes to keep us guessing....
The oxygen worked for about 18 hours.
Her heart rate is now back in the 150 range and the alarm is going off more than it's not.
What that means, I have no idea.
It could mean her dysautonomia is affecting her heart.
Or that she need a higher level of oxygen.
Or her heart has something undiagnosed.


One thing we DO know is:
God. Is. In. Control.
We trust Him.
To help us, help her.
And to calm this Momma's fears.
And to quiet that little heart.

HE IS FAITHFUL.
And always will be.

"I wait for the Lord, my soul does wait. And in His Word do I hope."
~Psalm 130:5

Comments

  1. AmyDecember 1, 2012 at 5:25 PM

    I wish there was something we could do or an easy answer to your heartache... Praying for your faith, strength, sanity, health, and hope as you enter a new "normal."

    ReplyDelete
  2. NavhelowifeDecember 1, 2012 at 5:32 PM

    Love you. Mailed you two packages yesterday for some tangible reminders that you are always in my thoughts.

    ReplyDelete
  3. DonnaDecember 1, 2012 at 8:45 PM

    Prayers for your sweet family. Pretty sure you are definitely getting mom o the year award soon. Your babies are so stinking cute!!

    ReplyDelete
  4. DonnaDecember 1, 2012 at 8:46 PM

    Praying for your sweet family!!

    ReplyDelete
  5. KDecember 3, 2012 at 2:18 PM

    Often times when the body receives too much oxygen, it sends a signal to breath less. This is common in premature babies, so sometimes they give them carbon dioxide periodically to remind the body to send the signal to breath more. Try taking her off the O2 for a few minutes every hour or half hour and see if this works. A few puffs of room air could remind her body that she needs more O2 again.

    ReplyDelete
  6. GrandmaDecember 4, 2012 at 7:47 PM

    Dear Heavenly Father, how can this be? We were just together, she was happy and playing and showing everyone how incredibly bright she is and how she is overcoming the things she can't do by just doing it in another way.... I hate this awful thing that has hold of her body!!! I also know with everything in me that God is in complete control ..... I just feel so small and weak. I want to be able to kiss her and make her well, but I will just have to let God do that for which Grandpa and I are fervently praying.

    ReplyDelete

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