Waiting 1A – Week Four Ending

The breathing tube is out and Little is awake! She is still a bit groggy and is having a hard time getting comfortable due to residual effects of the medication, BUT she is talking and smiling and we couldn’t be more grateful.

She went 24 hours without a fever!!! Jeremy said they put her back on the cooling blanket this afternoon but he didn’t get the entire story behind what was going on. When we walked in this morning, the first thing she said to me was, “I’m hot and a bit pukey.”  So, even without the fever she was feeling warm and was sweating. We’ll just keep praying against the fever.

The second thing Little said to me was, “Are you going to sleep in a sleep room tonight, Mom?” If you remember last week, she does NOT like when I sleep in another room and leave her at the hospital. This has GOT to change moving forward and so we’re adding that to the prayer list. We have a long road ahead of us and the bed at the Ronald McDonald House are really more conducive to a good night sleep than the couches in her room. I thought I would be done with sleep training by now!

Last news for today – quitting my job became more real and I got a bit sad. I sent out some information for the last time and that was a big deal. And then I saw my boss (the pastor) and he mentioned getting the computer from me this week.  I am cleaning it off tonight so that I can get it to him. It makes everything seem so real and it made me sad. Is it silly that leaving your job can make you long for heaven?

My cousin-in-law (is that a thing?) sent this song to me today and I just LOVED the lyrics! With ALL the paragraphs above in mind, what an incredible reminder this is of the Truth we believe:

“Sovereign Over Us”
There is strength within the sorrow
There is beauty in our tears
And You meet us in our mourning
With a love that casts out fear
You are working in our waiting
You’re sanctifying us
When beyond our understanding
You’re teaching us to trust.

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us

You are wisdom unimagined
Who could understand Your ways
Reigning high above the Heavens
Reaching down in endless grace
You’re the lifter of the lowly
Compassionate and kind
You surround and You uphold me
And Your promises are my delight

Your plans are still to prosper
You have not forgotten us
You’re with us in the fire and the flood
You’re faithful forever
Perfect in love
You are sovereign over us

Even what the enemy means for evil
You turn it for our good
You turn it for our good and for Your glory
Even in the valley, You are faithful
You’re working for our good
You’re working for our good and for Your glory

You’re faithful forever
Perfect in love
You are sovereign over us.

— Aaron Keyes

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Waiting 1A – Week Four – Won’t Stop

IMG_1948A quick update:
Little is stable and has had no arrhythmias for 48 hours! They are decreasing the medication that targets this specific issue and transitioning  to a milder version later today. *We won’t stop praying for an absence of arrhythmias.

She had struggles with low blood pressure on Thursday night but it has stabilized as well and she has come off of the medication targeting that problem. *We won’t stop praying for stable blood pressure. 

Little is still lightly sedated but they have removed two medications that were helping her sleep. There are plans to continue reducing sedation throughout the day and there’s hope to remove the breathing tube either late today or early tomorrow. This will be a hard process. She will be delirious from all the sedation and that will add to the discomfort that already comes with having the tube removed. I am pretty sure I am not strong enough to watch all that and so Jeremy has said he’ll handle it and I will probably wait down the hall or in our room.  *We won’t stop praying for Little and for  her transition off the breathing tube to be smooth and eventless. We’ll pray that she will not be scared or hurt.

The immediate concern at this point is that she still has a fever. None of the cultures they have sent away are growing anything and the antibiotics she has been given should have affected the Cdiff enough that the fever shouldn’t be a response to it. There is concern that something is being missed. We were present during rounds today and were able to share with the doctors that Little’s neurological issues have caused temperature regulation to be an issue her entire life. They were actually excited by this information and decided to use aids to adjust her body temp (cooling blanket, etc.) to see if they might help her to regulate her core temperature. If what’s happening is an actual fever, then this won’t really work but if it’s neurological, this could be key! *We won’t stop praying for answers about Little’s body temperature to be  reconciled. If Little’s fever persists we will pray that the source will be discovered and able to be treated. 

IMG_1968Jeremy and I have checked into the Ronald McDonald House for the time being. The provision this place affords is overwhelming. It’s 2 part dorm life, 1 part hotel life but it is more than I would have hoped for or imagined. Walking through the lobby I just kept thinking how much my kids would love it. *We won’t stop giving thanks for the ways the Lord has provided throughout the journey of the past five months.

SO MANY people have prayed for our Little over the past two days and my heart is full to bursting. Knowing that so many are lifting our daughter before the throne of grace is so encouraging and is having effect. If friends will keep reading and praying then I won’t stop sharing and HE promises He won’t stop answering!

“What a Friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry,
Everything to God in prayer!
Oh, what peace we often forfeit,
Oh, what needless pain we bear.
All because we do not carry
Everything to God in prayer!

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged;
Take it to the Lord in prayer.
Can we find a friend so faithful,
Who will all our sorrows share?
Jesus knows our every weakness;
Take it to the Lord in prayer.”

—  Joseph Medlicott Scriven

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Waiting 1A – Week Four – Urgent

Tuesday night we went to sleep just like every other night at the hospital. Little snuggled down after taking her Melatonin, I read her a chapter from the book we have been going through, and then I turned off the lights and tiptoed over to my “bed” to read in the semi-darkness. It was a good night. We both slept.

Wednesday morning started like no other morning in the hospital had started. Little was coughing a ton and started throwing up by 5:30 AM. I called Jeremy to let him know that this wasn’t going to be a good day and by 7:00 AM Little had experienced her first cardiac arrest of the day.

She went on to have four more episodes of v-fib (ventricular fibrillation), a.k.a. cardiac arrest, throughout the day with the last being at 7:20 PM. The defibrillator that is built into her pacemaker worked to correct three of the times but once she had to have compressions (think CPR) and once they had to shock her externally. All throughout the day they fought to keep her stable.  They fought over what “next steps” to take. We fought to keep it together.


Bottomline: Little’s heart is WEAK; it’s just done. For now they have her stabilized, intubated, and sedated; they are struggling to keep her fever down. If things take a turn toward the worse the next options are transitional mechanical aides (ECMO and VAD). I am not going to go into all of our thoughts on these options, but trust me there are MANY CONFLICTING THOUGHTS.

We need prayer.

  • Little needs a heart. We have found out that her name has come up on the list for several offers but on most she has been far enough down that someone else took the offer first. Just Tuesday night she was the #1 person on the offer list but the team turned down the heart because it wasn’t a good fit. We are encouraged to know that this is going on behind the scenes and thrilled that the team is committed to her best. We are praying specifically that the Lord would provide the right heart for Little in His perfect timing.
  • We need wisdom. The decisions that loom ahead of us are difficult and gray. We are praying for clarity as we walk and that we would hear the voice of the Lord whispering, “This is the way – walk in it.”
  • We need faith. This is where the rubber meets the road. Will we hold to what we believe or in our sadness falter and allow anger and bitterness to gain a footing? We are praying specifically that the peace that passes understanding will guard our hearts and minds in Christ Jesus.


“Even If”
    “They say it only takes a little faith
    To move a mountain
    Well good thing,
    A little faith is all I have, right now
    But God, when You choose
    To leave mountains unmovable
    Oh give me the strength to be able to sing
    It is well with my soul

    I know You’re able and I know You can
    Save through the fire with Your mighty hand
    But even if You don’t
    My hope is You alone
    I know the sorrow, and I know the hurt
    Would all go away if You’d just say the word
    But even if You don’t
    My hope is You alone.

    You’ve been faithful, You’ve been good
    All of my days
    Jesus, I will cling to You
    Come what may

    ‘Cause I know You’re able
    I know You can
    Save through the fire with Your mighty hand
    But even if You don’t
    My hope is You alone.
    I know the sorrow, and I know the hurt
    Would all go away if You’d just say the word
    But even if You don’t
    My hope is You alone.

    It is well with my soul
    It is well, it is well with my soul.”

— by Mercy Me

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