Update: Day 10 & 11 {pray with us}

A lot has happened for sweet Everett since my last post.  This tends to be his little trend…like a rollercoaster…up and down…smooth sailing and terrifying drops…breath taking and vomit enducing…Everett likes to keep everyone on their toes.

So Thursday late night/wee hours Friday morning Everett ended up having a really rough time.  He battled oxygen saturation dropping continuously and heart rate shooting up until about 2am. He still did two additional sprints and did okay with those.  If I haven’t already explained sprints they are an extended period of time of him breathing mostly on his own.  An x-ray showed more fluid in his lungs so they decided to try and dry him out more and not to move forward with extubation.  Some of his bloodwork did not look great so it was another fine balance of getting everything just right. They pressed on by working on his sedation again too because he was awake way more than he should have been…it was pitiful and hard to watch. He did get an ointment for his wound areas which has already started to kick in.  I can’t even imagine how his little body feels at this point.

Yesterday during the day I was so exhausted from staying up all night with him while he was struggling, after lunch Ashley stayed with Shuai and I went and took an over 4 hours nap.  When I returned to his room he’d kicked some ass all afternoon…sprinting like a champ and better blood work…so they decided to try and extubate him around 8 o’clock that night.  I was really nervous about this extubation  because the last time around had not gone well.

There we’re some new littles to join our floor and Everett was slower to wake up so they ended up starting his extubation around 9.  Finally they got the tube out and got him settled on the CPAP machine.  Ashley and I went back to our room around 1130 to try and get some sleep.

Around 2am his nurse called my room and said he was struggling a lot.  I got up and headed for his room.  His heart rate was crazy fast and his heart rhythm was so wild it had everyone perplexed.  They tried all their tricks.  They could only get him pacing with the pacemaker at 180…any lower his body would override the pacemaker and go well into the 200s.  They tried all their tricks and finally after some scary oxygen sats from his blood work they decided they needed to intubate him again.

After they got him intubated again his numbers were still wonky, but finally got him settled out and his chest x-ray looked fine.  His pacemaker was finally pacing him a little lower as well.  They called for an echo (like an ultrasound on your heart) and every time the echo wand would touch his chest his blood pressure would plummet.  It was the craziest thing.  He ended up having to have multiple epi spritzers and he continued to battle and fight all early morning long.  He is such a strong and brave boy.  I do not see how his little body has handled so much and fought the way it has.  Around 5:30am they finally got him stable and his numbers settled out.  His team was baffled by what exactly had taken place.  They ordered another more extensive echo to be done today and a team of rhythm specialists continued to look at his rhythm trying to figure it out.

He has been stable all day and they have been letting him rest and not work too hard today.  He’s done two more sprints today and his blood work had looked good.  His more extensive echo did reveal that his AV valve, that was repaired during his first surgery on the 28th, is actually now leaking worse than it was prior to his repair.  They do not understand why, but said he will not be a candidate for the Fontan procedure he needs with his AV valve leaking so severely as it is now.  This also might be the reason he is having such a hard recovery and such a hard time getting off the vent.  Dr. Bove along with Everett’s team of surgeons, cardiologists and specialists are meeting to discuss what all this will mean for Everett.

This is obviously not where we imagined we’d be.  I’ve cried a lot over the past two days.  I’ve continued to whisper in Everett’s ear how strong and brave he is…how special he is…and how proud of him we are. I’ve also told him how much I love him and that I miss him so much.  We miss our boy.  We miss his voice and his little personality and his chatty self and his hugs and kisses and cuddles.  It makes me want to say all the cuss words.  I desperately just want to hold him in my arms and take him home.

I’ve told God I will praise His name because He is always deserving of praise.  I’ve begged Him to heal Everett’s body.  I’ve told Him thank you for the gift Everett is.  I’ve also asked Him what is He doing…what is He up to.  I don’t understand any of this, but He doesn’t owe me one explanation of why…He’s the God of the universe…He’s my Creator…Everett’s Creator…and He loves us both far more than we could ever understand or imagine.  I simply have to trust Him and surrender our son over to Him every hour of the day.

Please continue to pray with us for Everett’s little body, for him to be comfortable and that he continues to fight like hell.  Please pray for Dr. Bove and Everett’s team…for wisdom, discernment and guidance.  And please pray God would heal his beautiful little body.  And if He heals Everett may we praise His name and if it all falls apart right in front of us, may we still praise His name.

50 Comments

  1. Still praying and believing for a mighty work in Everett’s body.

  2. Crying with you. Praying for Everett and your family. Praising God for your faithfulness.

  3. Praying for your son and praying for your mama-heart. Praying your praise continues.

  4. Still praying for your little warrior.

  5. Andrew Marsh says:

    Amen, amen and amen again!!! It’s so easy to say this next bit but I mean it from my heart and soul. It’s not just twee words, which were not thought about and it’s this and I think it so much:
    “When things are super great, God is good. When things are okay, God is good and, when things are dreadful, God is still good!”
    He does not change, as we do. He does not stamp his feet, as we do (but probably pretend we don’t). He does not spit his dummy out, as we do. He just keeps on loving us with that unique, everlasting, unchanging, eternal LOVE! He does not change. He is not man, that he should lie.
    I get how terrifying all this must be for you both, as Everett’s mom and dad. But, BUT, GOD HAS HIM, GOD HAS THE WHOLE SITUATION!
    I really wish I had the answer for you, had some comfort for you. But I don’t.
    But you and I both KNOW, absolutely KNOW, WHO HAS THE ANSWER!
    I’m praying for you all.
    Andrew

  6. Christy abell says:

    Praying SO HARD. I will take one for the team and say all the curse words for you if needed.

  7. I continue to cry and pray with you.

  8. Lori smith says:

    Hang in there, brave Momma! Praying NOW!

  9. Praying for your sweet little boy..

  10. I’m crying , pleading, praying for your baby boy. You are not alone.

  11. Please know that we continue to pray…….and not grow weary of praying! Wish I could send you 8 hours of sleep! Hugs!

  12. Praying every time this little soul comes to mind. I cannot imagine all you are walking through, and I don’t know you. But having followed your journey for years and mothered four kiddos that I didn’t birth, I know the fierce love you feel. May you know God’s strength in this horrendous time. Praying to the God Who held Everett first. With love, Riann for the Schell family

  13. Ellen & Rusty says:

    Praying for Everette, you, Josh & kids, the medical team. May the Lord wash over you and sweet Everette with Perfect Peace & Rest! We are praying and trusting the Father! Much Love!!

  14. Madonna says:

    I admire you so much…Your faith in our Lord is so strong. ❤️Your baby boy is precious and I am lifting prayers in Indiana (originally from Dickson, TN). God is listening

  15. Still praying and sending hugs from Nashville.

  16. Maureen fuson says:

    I am also praying for Everett, for you and the rest of the family, and for Everett’s medical team. You are incredibly strong in the faith and I’m sure that strength is rubbing off on everyone else. You have a beautiful soul, Laura! Everett was extremely blessed to cross paths with you and Josh. May God hold you and this sweet little boy in the palm of his hand. Much love from Maureen Fuson (Northside).

  17. Becky mann says:

    Prayers for your baby boy, your heart, your continued devotion to our Heavenly Father and for your children and families… in South Carolina

  18. Leah TOMLINSON says:

    Big bold prayers to our big bold God! Praying for healing, wisdom, rest and strength!! Praying Everett, you and everyone on Everett’s team feel the presence of God.

  19. Charleen beasley says:
  20. Tambra ( Cheyenne"s mom) says:

    I pray for Everrett each and every day, In God’s name. I ask Cheyenne, any news on how Everrett is doing. God is great. Keep your faith. Prayers flowing.

  21. Marianne cupples says:

    Still thinking of you and praying for you and sweet Everett!

  22. Jeff CaStle says:

    We are praying for healing and strength for you all.

  23. Robin c says:

    What a mighty God we serve. Prayers continuing in Jesus name.

  24. Donna Buchanan says:

    praying for you and your dear little one. Praying for healing for Everett. And for you, strength.

  25. “Rhythm ” is my prayer word for this year, so I’ve been praying over it since Jan. –& I’ve been praying for Everett since you shared with me. Now I know these prayers have been woven together, whispered in God’s ear for months, and now prayed aloud on Everett’s behalf. Love you!

  26. Praying, praying, praying for your sweet Everett. Continuing to ask God for mercy and to heal your precious boy!

  27. Ellen brown says:

    Praying for peace for the Kelly family

  28. Jen smith says:

    Pleading for a miracle! May God give you strength, peace, and faith.

  29. Praying with you for the healing and peace! Praying for you as you walk (sleepless and exhausted) through these deep waters!

  30. Christy Hamilton says:

    Love you, Precious Laura!!! We are praying for healing and comfort for this adorable little Everett!!! He is a true warrior! Holding you all close in our thoughts and prayers!!

  31. Shalako law says:

    Praising the Giver of Life for blessing so many lives with your precious Everett. He has obviously touched countless lives and you have boldly proclaimed Christ to countless. Everett is fearfully and wonderfully made by the One who has gone behind us and before us and ordained our days. Praying for strength and peace in the days ahead. Give that sweet friend of yours a hug for me too from Amarillo! Ashley is the best!

  32. Prayers continue for all of you! While there will be a definite testimony in Everett’s healing, there is such a strong and powerful testimony you are living now! While you may feel weak, His strength is lifting you as a witness to other families there as well as the staff! Carry on “my good and faithful servant”!

  33. Gretchen says:

    I can’t even begin to imagine the struggle you are going through. Our family is continuing to pray for Everett, the doctors, and you and your family. I am crying for you and your little boy. You are all so strong and brave. Sending love to you and hoping you get some rest.

  34. Kelly Ford says:

    We are praying so hard for Everett and for you. I can’t tell you how much I admire your trust in God and your heart. Everett is a lucky boy to have a mama like you. We will continue to pray hard and steadfast for him.

  35. Glenda Hoagland says:

    Prayers said. Sending love to you and your family

  36. Lois leeds says:

    Each morning when I awake I look to see if there is an update on your beautiful baby Everett. I read your words I cry and wipe my tears and try to continue your heart felt post. Through my tears I pray that the lord will heal this sweet child and send his love and strength to help you and your family through this rough road. Praying for you and your family and the wonderful medical team ❤️❤️❤️

  37. So sorry for this experience. We are praying for your sweet family.

  38. Donna Nelson says:

    Praying for Everette every day. What a witness your honest, and full of grace and glory to God your blogs are. Thank you for taking us on this journey with you. Will continue to pray.

  39. Christina SChye says:

    I’ve been seeing mutual Facebook friends posting your links and wanted to let you know I’m praying for your sweet Everett. I’ll never understand why these innocent children who’ve been through so much already have to go through more, but I too trust in God and his promise. Take care and know you all are loved and prayed for.

  40. tonya Vander Slice says:

    Thank you for taking the time and effort to update us all on your sweet boy’s condition and progress. I know they are hard to write. So many details, and even more mental energy to sort it all out. I so resonated with many of the things you have written. I can’t say I know what you are going through, but I do know it is hard. I too have spent time walking/running those same paths and replaying the dramatic events that happen in our hospital room. It is a good place to process all the goings on. Thank you for your shining example of clinging to the Savior and trusting his Love, even when circumstances make us want to scream all the things. Prayers and thoughts are with you often, especially when we are at UofM. (We will be there again on Wednesday if you need me to bring you anything– my offer still stands from last week. Even if it is just a smile from a new friend.)
    P.S. The Rueben is my favorite!
    Tonya Vander Slice
    tcvanderslice@gmail.com

  41. Gwen Warren says:

    Praying for Everett every day. Wishing words could explain how I feel. May God continue to grant you the Peace that passes all understanding.

  42. What a blessing your faith is. Thank you for sharing it during these painful and difficult times. And thank you for sharing y’alls journey. Y’all are in my prayers constantly.

  43. Came across this on FB and am committing to pray for Everett and your family! May the peace of Christ rule in your hearts and minds as you continue to love and fight!

  44. Janelle says:

    I’ve been following Everett’s journey for about a week now. Praying for him and for you and your family! I find myself crying and then rejoicing with you as he has his victories and his setbacks. He is one loved little boy!!

  45. Cheryl Hartman says:

    Still praying from Nashville. I don’t even know you and your family but Everett has won my heart and I am begging God for a miracle.

  46. T Haggerty says:

    We are here. We will never go away.

  47. Praying with all of my heart…

  48. PRAYING huge prayers in Texas!

  49. I read this last night and didn’t comment then because I just had no words. I’m so sorry that his heart valve is leaking worse… and if it makes me sad, I can only imagine how it makes you feel.
    But you are so right in your statements of faith and trust and intentional praise. And if you, as Everett’s mom, can hold to those truths, then I must too. Praying for wisdom and healing and grace and rest, even if I don’t understand what God is up to any more than you do.
    *hug*

    • I am just started reading about your story and I am in tears. I can’t imagine how gut wrenching, how heart breaking. We surely don’t understand what God is doing sometimes, and don’t see how this agony can be “for good”, but thankfully God sees the whole picture. He knows the pain because He watched His Son go thru the pain. I will continue to pray for Everett’s complete healing, and God’s Will.

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