Sunday, March 25, 2012


Dr. Seuss is one of Patrick Jr.'s favorite authors.  In fact, it's almost all we read if he is choosing.  To keep up the family tradition, we read them to Charlotte too.  I just caught a glimpse of one entitled, "Put Me In A Zoo," and I think is fitting given the change of events which have unfolded today.

The storm broke this morning as I arrived at 730 am.  To get to the nuts and bolts of it all, her stats were trending poorly and she had a fever.  Based on overnight observations, a few labs (bloodwork and cultures) had already been sent off and we were thinking potential infection but because of her sudden and severe dip in stats, her docs acted fast.  Again.  She was given emergency IV drips of her 'heavy hitter' drugs including a wide spectrum antibiotic and blood as well as put on oxygen.  (She is only on air flow - ie, a nasal cannula - NOT a breathing machine.)  Additionally a blood gas was drawn and showed that her lactate (remember that NASTY word from many moons ago?) was high and at a 5.  To help put it into perspective, she was at a 9.9 when she was put on ecmo, the heart and lung bypass machine.  Yep.  

The true BLESSING in all of this is that she was stabilized relatively quickly and has remained so since shortly after discovering all of this nastiness. And 12 hours after her culture from one of the overnight tests, revealed that she has Gram Negative Sepsis.  People, people,'s the big bad ugly.  As in REALLY NASTY.  As in, if not treated almost immediately in people like Charlotte, ends in mortality.  Clearly this is not good news to hear BUT what is good is the PRAISE that we have to our GOOD GOD that she was stabilized and remains so.  

Where do we go from here?  We wait for the cultures of the tests to grow anything in the next 48 hours and given what is revealed, will determine how to move forward.  Potentially, given that Gram Negative Sepsis is a bloodstream infection, this could have infected her brain shunt (the VT shunt).  Again, based upon the cultures, etc, the neuros may move forward with tapping her VT shunt to see if it has been infected.  Tapping the shunt involves using a needle to puncture the shunt between her skull and skin to extract fluid.  If it reveals that there is infection, then the remedy would be to surgically remove the tubing, not the shunt because she needs it to live, and let it drain externally.  Once her body fights the infection, then it could be surgically placed back in.  We would then have to wait for 14 days before having the Gtube surgery, just as we are currently waiting it out.  Too if the infection has gotten into her spinal column fluid, a spinal tap would need to be done.  If the shunt is at all involved in this, then we are looking at potentially another MONTH BEFORE being able to have her Gtube surgery.  

I pray to travel the path with the least amount of resistance:  We pray for tomorrow's labs to show NO new cultures growing.  Again, we pray for them to be NEGATIVE, just like her fluid balance from weeks ago, right?!  If this is the case, then we can start counting from tomorrow, 7 days.  So next Monday, Charlotte could have her Gtube/Nissen surgery and therefore not bumped too far off from dare I say, "schedule."  

Don't you feel like saying, "what in the world happened here?!"  Well, this is not entirely uncommon given Charlotte's life course.  She has lived in the ICU and has had external hardware, ie like all of her lines which can be breeding grounds for infections, despite the best precautionary methods taken.  Most likely, her broviac line is the culprit.  WE PRAY that "this" was nipped in the bud early enough to not have steered her completely off course.  And to illustrate just how gross this infection is, the culture grew in 12 hours to reveal itself as Gram Negative Sepsis.  

So there are a lot of things to pray for but overall for Sweet Charlotte's comfort level.  In an effort to aide in administering medication and blood, an IV line was attempted 3 times to no avail.  Fortunately, Charlotte was calm the entire time as I talked to her about the warm sun that she got to feel yesterday and  her beautiful self lying in her pink polka dot blanket.  She was perfectly still...calm...relaxed.  We pray for this peace for Charlotte as she recoups.  We pray that she is able to recover swiftly and without complications like delayed stay, additional IV lines and her brain shunt being affected.  

In your prayers of THANKSGIVING, please remember our good doctors and nurses and the Mommy instinct that God continues to provide me.  I have been reminded that because of our quick response time, Charlotte is stable...and ready to be placed in my arms again.  There are MANY blessing here today, despite what I felt when we began this roller coaster ride yet once again.  Fortunately, I realize that God shines through all things, no matter how "pretty" or "ugly" they may appear.  He is GRACIOUS.  He is GOOD.  He will lead us through this with HIS LOVE.


  1. Praying without ceasing for you all!!! xoxo

  2. Perseverance in prayer and trusting the Almighty God to provide Charlotte's every need....
    In Christ,
    David & Candy

  3. "Be strong and courageous. Do not be afraid or terrified...for the Lord
    your God goes with you, He will never leave you nor forsake you."
    Deuteronomy 31:6
    We will continue to pray for Charlotte and her family.

  4. thinking of you all. sending lots of love. xoxo

  5. Sarah, I'm praying for her & all of you. Your positive outlook & trust in prayer is simply beautiful. Love you. -Emily

  6. Praying for you and your beautiful family!


  7. Praying and thinking of you all. Lots of love...

  8. Our Mighty and Sovereign God, we thank You that You are able to do all things, that You hear our prayers, and that You are our Rock, our Defense, our ever present Help in time of need. Oh Great Physician, we call out to You on behalf of Charlotte, Your precious sweet girl. We pray that You will heal her and restore her to perfect health. We pray that You will do a miracle in and through her. We pray that You will hear and answer our prayer for the glory of your Son, Jesus. We pray that Your Comforter, Your Holy Spirit, will be poured out on Charlotte and her family as they continue to walk down this difficult road. We thank you that they do not walk alone. Not only do You walk it with them, You pave it out ahead of them and also serve as their rear guard. As David prayed, "You hem them in, behind and before, you have laid your hand upon me." (Ps 139) Lord, we ask for healing in the name of Jesus and we believe in faith that You are doing this. Thank you. We praise You for the healing work that You are doing in Charlotte even now, and the testimony that You are giving to her and her family. We thank you, Good and Gracious Lord, that those who trust in you are never put to shame. You never fail, you never disappoint, you are always faithful and we trust in You. In the powerful name of Jesus we pray, Amen!

    ~Love you, my friend Sarah. I am thinking of you and praying for you continually!