Monday, November 18, 2013

Our days are uncertain, but our feet are planted on solid rock...

So, the plan for today changed a little after rounds this morning…  They decided to pull her LAP (left atrial pressure) line before extubation, for safety reasons (extubating with high pressures increases the risk for bleeding, etc so they needed to fully sedate and paralyze her to do so), so that means that they won't have that LAP number available to see how her heart reacts to being extubated and moving around.  Instead, they will have to just wait and watch her to see if she can tolerate being on cpap (gives positive pressure to the lungs and oxygen), then hi-flow oxygen, then low flow oxygen, then no oxygen or if she can't maintain her own oxygenation then that will tell them that she needs to go back to the OR.

Here is what my conversation with God sounded like this morning as they were about to extubate her (with a whole lot of uncertainty about whether or not they would have to emergently reintubate her) …  "God, you know that we just want your will, so if your will is for Grace to get a valve replacement, it seems like her Dr's will need to see her "fail" after extubation in order to make that decision clear.  If that's your will, will you please protect Grace from experiencing an ounce of pain or discomfort during the "failure?" God, your word says that nothing is impossible with You, so I know that you can allow her to "fail" while giving her complete and perfect peace and comfort.  Thank you for being an all powerful, trustworthy God that can do ALL things!"

Grace was extubated at about 2:00 CST and she was successfully transitioned to cpap which she HATES :-(.  Who can blame her, check this contraption out…

As we've mentioned before, it is SO VERY HARD to keep this little girl down!  They can only give her so much sedation because they can't suppress her breathing since she is no longer intubated.  They gave her as much sedation as they could safely give her and it took hours before she finally fell asleep.  I just spoke with David and they are going to try to transition her to the hi flow oxygen (which is just the nasal canulas versus this awful mask) when she starts to wake up and then wait and watch to see how she does with that…  From one day to the next (or more like one minute to the next) we don't know what to expect, but we are grateful that God knows!  Will you please continue to pray that God's will would be made clear to her Dr's sooner than later and that Grace would be spared from any pain and trauma as His will is being revealed (because God can do that :-)?  Please also continue to pray that God would align David, myself, Abby, and Andrew's hearts and minds with His will.  Thank you!!!

One of many testamonies as to how God speaks to little people, is how He has prepared and refined Abigail and Andrew's hearts "for such a time is this."  Last night Abigail and Andrew's best was "Mommy coming home" and as she was praising God for their best she prayed "thank you God for bringing Mommy home today, that is definitely our best, but we thank you for letting Mommy and Daddy be able to be in Boston with Gracie because if we had to have surgery we would want our Mommy and Daddy with us too."  Praising God for His mighty and tender work on their little hearts and minds!

This picture is such a powerful depiction as to what our life is like right now…
 "For in the day of trouble he will keep me safe in his dwelling; he will hide me in the shelter of his tabernacle and set me high upon a rock."  
Psalm 27:5

So often, when we feel like the water keeps rising and we can hardly keep our heads above the water, God uses y'all to give us the strength to keep swimming.  Y'all have blessed us prayerfully, with words of encouragement, and tangibly (whether it's gift cards, money or a plane flight) for which our cup overflows with gratitude! You know who you are!  Some of you may have seen what our amazing friends, Summer and Lenny Alvarez (whom we haven't seen or talked to in years) did to support our family, but in case you didn't, please check out her blog,  Summer is crazy crafty, hilarious and oh so sweet, so I know that you will LOVE her blog.  I feel like the words, "thank you" don't come close to expressing what is in our hearts, so please trust and know that you, Village, are priceless to us!!!

"GRACIE STRONG (in God's strength)!"

1 comment:

Megan said...

Your faith and strength continue to blow me away. Hang in there Ross family. You've got a fighter in Miss Gracie and I have no doubt that she will continue to amaze the doctors in so many ways. xoxoxo