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What now???

Not much has changed in the past few days. Kai still seems pretty stable. The new pain med plan is still working. He is sleeping well, snuggling and spending some time each day alert and awake. His wounds are healing. His hair is growing. He is peeing and pooping and maybe even let out a few little smiles.

After spending a few days asking for vitals I gave up, there is no obvious sign of decline.
Today I have moved on from blood pressure cuffs to brain scans. After spending the day yesterday thinking about it, trying so hard not to say it out loud, during morning rounds today it just came out
I know theres no diagnostic reason to do a scan but i’m curious what’s going on in there! Maybe we could get a CT scan???

Kai has seemed to spark everyones curiosity. His doctors continued to mention the possibility of a scan all day.
In brain tumor world we rely so much on scans and tests every few month to confirm or deny our suspicions. It’s the only way to know one way or another what is really going on. When you are inpatient, those suspicions and curiosities are satisfied for about a week instead of a month, so we are all getting quite curious!!!

But then what???
What if by some miracle, just like the infection, the hydrocephalus has also cleared?? Or what if it has stayed the same, no worse, but still needs treatment??? Both of these potentials will end in us having to make more decisions… Go home? Surgery? Treatment? Feed?
Or maybe Kai is just super tuff and things are worse but he just still looks so good!
I feel like I have analyzed every angle of this situation. I have fought. I have accepted. I have pushed and been patient. I have been willing to let go for the sake of Kai. But no matter which scenario I surrender to, there is always something more testing me, pushing me, making me question.

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19 thoughts on “What now???

  1. Stay strong!! Miracles happen everyday and it seems that all of the light and love that are surrounding Kai are helping him.

  2. I am praying for your family!! I have to mention, I was told to go to hospice last December. My son Lucas is doing amazing right now and has been in school all year!! I hope you and Kai have the same fortune!! Good luck and I will pray for you. Xoxo, amy

  3. Kai, you and your family are continually in my thoughts and prayers! I do not have the pleasure of knowing you, but I am praying constantly for Kai. He is changing the world! This post has made me smile. I am praying for his miracle. May love, peace, hope, health, joy, faith and comfort surround you and Kai. He is such a precious, beautiful little boy. Many hugs. 🙂

  4. The unknown is the toughest part of your journey. There are no right answers. Just being there sharing this time together is ultimately the most precious gift. I will continue to pray for your family for peace and light to surround you. You are doing an amazing job, stay strong.

  5. I truly admire your courage, and your determination. To be able to read your questions, your conflict, your hope and even resignation, it has made your story so inspirational for me. I continue to pray for your peace, health, and well-being. Your guarded optimism and questioning of your decisions truly shows your true love and I can honestly say I admire your character so much. Regardless of what the road ahead brings you, I hope you are comforted and can have peace. I will continue to pray for you, Kai, and your “extended” family as I have done several times a day for the past week. I do not know you, but I feel I have learned so much from you and from Kai’s story, and as a parent, it has made me appreciate my family so much more. Thank you so much for sharing your story with the world, and try to stay strong.

  6. Praying for Kai’s miracle. nurture and continue to love on that little boy:-) Feed his body and love his soul. have the scan and treat what can be treated and then pray, cuddle love on him May you all enjoy a peaceful comfortable Thanksgiving together. that would be something that I would be So Thankful for. go Kia you are an amazing little spirit who has touched us all. may God continue to bless you with better days

  7. Heavenly Father…you have blessed Kai & his family with some positive changes. I pray that you’ll continue to heal this little boy in the only way that You can. You’re a wonderful, loving Father and I know that you can perform miracles. Please, PLEASE heal Kai…please clear his body of all disease & sickness. Please give him this miracle recovery so that he can grow to be a healthy, happy, Jesus loving man. In your glorious name, AMEN!

  8. You are so strong and brave, accepting every new development and even when a curveball throws you off the chosen path. Hope is hard because if it creeps up and then is taken but different news it hits you all over again. I think of you and Kai often! Stay strong! I know you will

  9. Kerri, I agree with Chris G. You are an inspiration to all of us, and the challenges and questions you have to face definitely reflects your love for Kai. We read about incredible miracles every day. With God All Things Are Possible. I don’t know the “plan”, but all I can suggest is to open your heart and mind. Gods speaks through others all the time. I pray the answer will come to you. It just might not be in the way you expected. Take whatever God and Kai are giving you. Put your self in Kai’s shoes and think about what you would like. You have put all your thoughts into what is right for Kai understandably, but I think it might have made it difficult to see what is right for you, which ultimately would be right for Kai. LOVE is an incredibly strong gift. We all continue to pray.

  10. Thinking about you guys everyday. It’s good to hear he isn’t suffering anymore. I hope you get good news with his next scan, whatever that may be.

  11. Kerri, I continue to think of you all daily…in fact, many times throughout the day. And then I read posts from all of the many Mamas and Daddies who write the same, how we are all praying for Kai, routing for him, and hoping for a miracle. Many days, he’s one of my first thoughts when I wake up in the morning. I check for an update daily, hoping for good news!

    Thank you for sharing your lives with us. You have brought together a group of strangers. You have changed our lives, our perspectives, our ways of life. You have inspired us through your love, strength, and honesty.

    We will continue to do everything we can to help. And even though I don’t know Kai personally, I can tell you that I feel so much love for him. I will continue to pray for a miracle.

  12. NEGU!!! You are his momma and you should be curious and push for them to do whatever they need to do to make you feel at ease. At least you are fighting for you sweet baby boy. Praying for you and your family and that sweet baby boy. Miracles do happen.

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