Once Upon A Prayer

Monday, July 16, 2012

Day 4 - Morning

The goal for Fontan patients is to get the breathing tube out as soon as possible after surgery.  The initial plan was to extubate Lily on Friday evening.  Obviously, with all of the complications she had it was not possible to take her breathing tube out.  The problem with keeping the breathing tube in is that they suspect this is a huge contributing factor to her dangerously low blood pressure.  As of right now, Lily is on the pacer which is keeping her heart rhythm sinus (normal), and her blood pressure normal.  She is on the maximum dose of Procainimide (medicine to help with her irregular heart beats), Lasix & Diuril to remove her fluids (Lily is REALLY bloated), Heparin to thin her blood since they suspect she has a clot covering her fenestration (4mm hole created on purpose by the surgeon to release pressure), and Presidex for sedation with the occasional Fetanoyl bolus for pain.

After rounding this morning, the doctors decided that they would like to see Lily come off of the breathing tube to see if this helps with her low blood pressure.  They have lowered her breathing machine rate to see if she can tolerate it, and hope to test her this afternoon to see if she can breathe on her own for an hour before they remove her tube.  Lily would LOVE for her breathing tube to come out.  She is very alert at times and points to the tube and then the door.  I can only suspect that baby girl is saying, "Get me out of here Momma!"

Please nobody tell on me...
I haven't changed Lily's bow yet today ;-) 

He performs wonders that cannot be fathomed,
miracles that cannot be counted.
Job 5:9


  1. I won't say a peep! Praying everything goes well. Such a strong and brave little girl... and beautiful too :)

  2. Praying for your sweet girl!!! I remember her as "Juliana"...standing in her crib....looking so beautiful. I prayed then that her family would find her and her heart would sustain her. What a blessing. Your courage, strength, faith, love and commitment are awe-inspiring. Hugs to your family. May the Lord continue to bless Lily with abundant miracles!!

  3. I pray the sprint goes well so that she can get extubated! Sending love to you during this time. Keep a fighting Lily!!!<3

  4. praying.....unconditionally day and night for your little girl.

  5. I was thinking of Lily in church yesterday during praise and worship and it brought back the thoughts I felt prior to Sarah going into her surgery. I know Lily's heart is more complex than Sarah, but God reminded me that he created that wonderful heart, he knew the complexities of it, he is not surprised by anything that is going on. I know the worry mom's have, but I wanted to share the inspiration that you have been to me. I read your blogs to my husband each day and it is just amazing to see know your story and love that you have for both girls that just came home. We are praying for you and Lily and know that God's perfect plan will be fulfilled because she is with a family that lifts her up to Him!

  6. Your family's courage (yours and Lily's in particular) in this difficult time is really inspiring. You guys have and will have such a testimony of God's goodness when this is all over!