Out of surgery

Kai’s surgery is over and he’s been moved back over to the PICU. The neurosurgeon was able to place a more permanent shunt as a pressure relief valve. The pediatric surgeon was able to install a port-a-cath. This is a permanent access point with a catheter into a vein near Kai’s heart. This will alleviate all of the needle sticks as IV’s should hopefully no longer be necessary. 

He looks so peaceful right now. Actually sleeping (thanks to anastesia) and occasionally stretching out his arms. Amazingly, I don’t remember the last time I’ve seen him do that. Something that basic. We love seeing it now. 

I don’t think we were necessarily worried about the surgery. Strange that it seems minor now. While waiting we were crying. I think about Kai’s future and I cry. I think about him here and I cry. I think about everything we’ve done since he came into our lives and I cry. The one thing I was sure of, though, is that as soon I saw him I would be smiling. Kai buddy always makes me smile.

26 Comments on Out of surgery

  1. toodie schwartz
    March 19, 2014 at 2:17 pm (4 years ago)

    The good news brings tears to our eyes as well. Thanks for sharing. All our love.

    Reply
  2. Maureen Voosen
    March 19, 2014 at 2:18 pm (4 years ago)

    How wonderful the surgery has been successfully completed, there is peaceful sleep, and smiles have returned. Hoping for a bit of rest for all. With love

    Reply
  3. Keri Miller
    March 19, 2014 at 2:26 pm (4 years ago)

    So glad to hear he’s out of surgery and it went smoothly. Thank you for taking the time to update us. Sending hugs and good mojo your way!

    Reply
  4. Chris Mueller
    March 19, 2014 at 2:27 pm (4 years ago)

    So glad to hear things went smoothly, Kai has a permanent tab in my web browser now – much thanks to you and Aki and co for keeping us all up to date on your tough journey. A friend posted that today is St. Joseph’s day with a quote from Pope John Paul II – “Saint Joseph was a just man, a tireless worker, the upright guardian of those entrusted to his care. May he always guard, protect, and enlighten families.” I especially like the last part. Blessings and rest to you guys.

    Reply
  5. Jane Murray
    March 19, 2014 at 2:29 pm (4 years ago)

    Thanks so very much for sharing your joys and sorrows with us. Hope you are all able to rest for a while.

    Reply
  6. Heidii Bugbee
    March 19, 2014 at 2:30 pm (4 years ago)

    So thankful for a successful surgery. Thank you for sharing your heart during this journey. You are both such incredible parents.

    Reply
  7. Amy Salinas
    March 19, 2014 at 2:37 pm (4 years ago)

    I echo everyone else when I say you both are amazing parents- I cry too for your sadness and all that you are going through – may he and you get some much needed rest, if possible

    Reply
  8. Betty Hammer
    March 19, 2014 at 3:13 pm (4 years ago)

    Thankful the surgery went well and that he is getting peaceful sleep/rest. You all are amazing. We love you.

    Reply
  9. Erin Brackney
    March 19, 2014 at 3:14 pm (4 years ago)

    Shawn – reading you and Aki’s posts make me cry. You are such an amazing dad and Aki such an amazing mom. You all’s courage, honesty, faith and love – even in the midst of this nightmare – have touched me too deep for words. My heart aches for this tribulation that Kai, you, Aki and Maya are going through. I am awestruck by the huge impact that little Kai has had on all who have met him – and now so many more who have yet to meet him! He has such a big life, sweet, funny personality and a brilliant and beautiful soul. And, to any that have met you and Aki, we know that he gets that sweetness, caring nature, funny personality, brilliance and love of life from you all. You have filled him with the knowledge of God’s goodness and mightiness and by example shown him true love – the kind that comes from our Heavenly Father. I have always admired that about you all and now more than ever. Thank you for sharing your hearts with us. So thankful for a smooth, uneventful surgery and for these moments of joy that you have had in the midst of this pain. Know that we are standing with you and believing in God’s wisdom and capacity for a miracle. We are celebrating life and praying for his healing power, comfort, strength and peace for you all. Praying that Kai, you, Aki and Maya would feel blanketed in His presence and love for you.

    Reply
  10. Susan Phillips
    March 19, 2014 at 3:17 pm (4 years ago)

    May this be the first of many peaceful days ahead so that all four of you can get some refreshing and healing rest. God will be Kai’s Watchguard while you sleep.

    Reply
  11. Selena Bragg
    March 19, 2014 at 3:20 pm (4 years ago)

    Thankful the surgical procedure is complete, and that he is peacefully resting. I am thankful that God is giving you that comfort at this moment. I hope you will continue to be able to “see Him” throughout the remainder of the afternoon – little glimpses of God here and there will help further build your trust in Him. He loves you so, and He loves your Kai. Still praying for a miracle… and HOPING!!!!

    Reply
  12. Michael Slockers
    March 19, 2014 at 3:29 pm (4 years ago)

    Beautiful words. Your love is so huge, I love to read about it. So glad that Kai Kai is resting. Still praying for God to work miraculous healing, joy, smiles, and victory!

    Reply
  13. Sara Nunez
    March 19, 2014 at 3:34 pm (4 years ago)

    God is with you Kai! He is there! He loves you! Shawn and Aki you guys are the best parents ever. Kai has known more love in a few years than some people have known in a lifetime. Don’t be discouraged, have faith, no matter what the remember miracles happen.God never abandons us. Prayer for Kai: In the name of Jesus Christ we ask you father to comfort and heal Kai. Father we know we are all on a journey back to you. We thank you for each day and ask that you bless Shawn and Aki with a long life with their son. In the name of Jesus Christ your son, we pray. Amen.

    Reply
  14. Kevin and Cheryl Smith
    March 19, 2014 at 3:40 pm (4 years ago)

    Your Heavenly Father sees every, single one of those tears as they fall from your eyes. Just as He never misses seeing a sparrow fall, He never misses a single moment of your life. He knows what is happening. His heart breaks as yours does. He loves you with an everlasting love that nothing can ever deplete or diminish. I pray that you will FEEL His presence today more than you have ever felt it before. That His everlasting arms will uphold and sustain you and amaze you. So many prayers are being prayed. Heaven is being bombarded with Kai’s name! And both of yours, too. Sending big hugs and much love your way.

    Reply
  15. Sienna Flores
    March 19, 2014 at 4:05 pm (4 years ago)

    Reading your posts bring treats to my eyes. Sending much love, prayers, hugs, strength, peace, wisdom, and comfort to you all.

    Reply
  16. Susannah Martin
    March 19, 2014 at 4:10 pm (4 years ago)

    Shawn and Aki, thank you for sharing this with us. I am glad you are sharing so much of Kai’s beautiful self and stories. All of us long to be able to make your sorrow go away. Know you are in so many people’s thoughts and hearts.

    Reply
  17. Annie Stein
    March 19, 2014 at 7:06 pm (4 years ago)

    Shawn and Aki,
    I think of you both so much throughout the day and say a prayer every time I think of you and Kai. I am in absolute awe of you both and your strength. We will not stop praying.

    Love, Annie and Jesse

    Reply
  18. Alice Preiser
    March 19, 2014 at 7:21 pm (4 years ago)

    Aki and Shawn, We are Amanda Noe’s parents, Ted and Alice Preiser. We are praying for you and your precious son Kai and we have people at St. Patrick’s Church in Elkhorn joining us in prayer. Your sharing of your faith journey has touched us so deeply! As parents of 8 children and grandparents of 16, we feel your deep struggle with the decisions you are asked to make and we are so deeply touched by your faith and trust and profound love that you have for your God and your precious son. Your sharing has made our Lenten journey so much more meaningful this year. May God give you peace and rest.

    Reply
  19. Melissa McCurry
    March 19, 2014 at 7:59 pm (4 years ago)

    Shawn, I want you and your family, especially Kai, to know that I’m praying with all my heart and soul to give y’all the strength and love you will need to get through this.

    Reply
  20. Kristin Schoen
    March 19, 2014 at 8:47 pm (4 years ago)

    So thankful to hear that Kai got some rest. Gia and I talk about Kai every day, and we say a little prayer for him every night. Sending your family lots of love…

    Reply
  21. Eugene Scott
    March 19, 2014 at 9:37 pm (4 years ago)

    Shawn and Aki:

    As I have read your comments, I have been amazed. You are both so honest, loving, and hopeful. And those words cannot come close to describing who you are and what you are doing for Kai as you love him in these nearly impossible circumstances. You are two of the most wonderful parents Kai and Maya could ever have. God put them in the right hands.

    I also thought of a story from the Bible as I have read your journal entries. Jesus asked the disciples who they thought he was. Finally Peter answers, “You are the Messiah, the Son of the Living God.” There is a lot of stuff in that story about Jesus but it is what Jesus said to Peter that made me think of the two of you. “This was not revealed to you by flesh and blood, but by my Father in heaven.”

    That is the way I feel about the two of you. The things you are saying and doing are not only you saying and doing them but our Father in heaven. I believe God is speaking to and through you, especially to Kai. But above all that means, if God is giving you words to say and love to express, even in tears, God is with you. I pray for Kai’s healing and for your strength and that you would know God’s love and presence in this difficult time the way Kai has known Him through your love and presence.

    Reply
  22. Amy Guesner
    March 19, 2014 at 10:12 pm (4 years ago)

    It was so nice to see you guys and Kai today. I have been praying for this little guy since we heard about the tumor and was so glad to get a chance to meet him. He is adorable! I saw how Maya reacted (overjoyed) when she came into the room and saw Kai. Even at 2 1/2 and 9 months they seem to be best of friends. And seeing Aki’s parents there and your sister and brother-in-law there all supporting and loving you was truly special. You have an amazing family. I hope that Kai sleeps well tonight and that you and Aki get some rest as well. Praying for a miracle.

    Reply
  23. LIz Darling
    March 19, 2014 at 10:27 pm (4 years ago)

    Simple pleasures take on a whole new meaning in times like these…for all of us.

    Reply
  24. Charles Kennedy
    March 19, 2014 at 10:31 pm (4 years ago)

    God bless you and Kai and your family. We think and pray about you constantly. Henry’s consistent response to “what do you want to say to Kai?” on cards, etc., from us or from the teachers, is an unhesitating “I love you”. Kai is his dear friend. May you all be granted some measure of peace in the days following this surgery.

    Reply
  25. Tom Pannell
    March 20, 2014 at 9:44 am (4 years ago)

    Thank you for sharing your thoughts and keeping all of us updated on Kai’s care. It is clear you and your family are loved by many people. Kai is constantly in our thoughts and prayers.

    Reply
  26. michelle king
    March 20, 2014 at 2:38 pm (4 years ago)

    Always in my thoughts…. and now so many of my friends as they often ask after him. Xxxx

    Reply

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