Sunday, August 12, 2018

A Waiting Game

We are officially in a waiting game. Willow is feeling better today and off all pain meds. So the only thing that is holding us here is her heart block. It seems so small, but it is a big deal. We were originally told to plan to be here 7-10 days, but now how long we will be here is quite open ended. They could wait up until two weeks after surgery (to make sure the heart won't start communicating again) to put in an internal pace maker, then there would be recovery again from open heart surgery. We are now out of the bay in the PICU and in an individual room in the PICU. But being in a city so far away from home, staying in a small bedroom in the Ronald McDonald house (with two single beds pushed together, your 3 year old sleeping between you, and your mother on an air mattress in the same room), and no car makes even a short time seem really long. We are all getting a little stir crazy, especially Cale. He has been really good, but I can tell he is getting bored and because we are so weary, we have less and less energy to entertain him.
Believe me, I know it is hard to keep praying for the same  thing over and over, but I beg you to continue joining us in prayer that her heart block goes away. I keep having this vision that just like Joshua, in the Bible, who continued to march around Jericho with no results each day, I will continue to trust until the walls blocking conduction in Willows heart come tumbling down. Pray that tomorrow is the day and we can come home soon. Pray for our hearts. We didn't have heart surgery like Willow, but they are still so heavy. I can't thank you enough for all your prayers.

10 comments:

  1. Yes Ali - praying for the walls to come down! Praying your little family will all be home again soon and together! Sending you love ❤️

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  2. Continually praying! We are not giving up. Willow is a fighter! Praying for a miracle.

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  3. Prayers for all of you on the way!

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  4. Ali, You continue to be in my prayers! Praying for strength for your sweet family and the tiny heart of precious little Willow!

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  5. Know you are prayed for many times a day. God has placed you on my heart frequently and prayers are being said for Willows heart block to reverse to a normal rhythm. Praying God will also sustain you as a family with strength and energy for Cale. Above all may his presence and love be amazing to you as you trust the process.
    Please God we beg you to take down the walls....No more heart block....Heal all of these hearts that are in your hands.

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  6. Always on our minds and in our hearts, Ali Pal! New day, new mercy!

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