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Saturday -fever

This morning we had about 5 minutes of open eyes. His hands were cold and his fingers were blue yet his breaths and heart were steady.
By midmorning his head was feeling warm to me and I noticed the color came back into his hands and feet.
We decided to do some suctioning to try and clear his throat a little and I also asked for a temperature on him.
I had been avoiding the suctioning as I was afraid it would jut irritate him more, but they had a tiny little tube and his wonderful nurse was very gentle. We waited until after his meds so he was pretty out of it, so it really wasn’t that bad. We cleared out a little of the junk and he has been breathing a little easier since.
His temp however was not so good. The first read was just under 100 so we started him on Tylenol. A few hours later he was burning up again at 104! Every time I touched him he winced. When I tried to pull his blankets back and let him cool he would shiver. His arms and legs were twisted and tight. He got another dose of Tylenol and Motrin this time. We also cooled him with wet cloths on his head and within a half hour his fever was going down.
We are not sure if the fever means he has an infection or if was caused by a change in pressure in his head. Either way we did all we can to keep him comfortable and thankfully it worked.

He has remained fever free since the afternoon but it really took a lot out of him. He is weak and limp and his breathing is slow and low. Today I really feel like he is starting to look sick. Well maybe more than sick, I guess he has looked sick for a while now. Today he looks like he is dying. His color has changed and his face looks different to me now. He still has his chubby cheeks, somehow, yet he also looks thin and frail like I can almost see right through him.
I spent most of the day in bed with him just watching. Savoring every inch of his skin. Every hair, every scar…soaking it all in…every little thing.

53 thoughts on “Saturday -fever

  1. Sending more hugs to you even though I know there are not enough. Keeping you all in my thoughts and sending love to you and your family.

  2. My heart just aches for you…aches. I’ve been holding my two little ones tighter since starting to follow your blog 2 weeks ago. Like someone else mentioned, it’s not at all fair that your precious little boy needs to be sick in order for strangers to appreciate their little ones more, but please know that you and Kai are having an impact far beyond what you can imagine. I am so, so sorry that he is struggling…hugs, mama.

  3. Kai, you, and your family are always in my thoughts. My heart breaks for you all. I truly will not ever forget Kai even though we have never met. Kai has taught me to not take my life for granted or those that I love for granted. As others have said, I wish that Kai did not have to go through this to teach me such a lesson. Your blog has made it so that Kai will always be in so many people’s hearts including mine.

  4. Kerry, you are an amazing woman and mother and Kai is a tough fighter. Our thoughts, prayers and love are with you all. Peace. Fondly, Stephen, Sally and Sophie.

    1. Your writing is beautiful…Im sure it helps to share your heart. Keep on strong Mom. You are such a blessing to that little boy of yours πŸ™‚

  5. Though I have never met you or Kai I have been following your blog through a friend of mine. You are all in my thoughts and prayers. Please know that Kai has touched so many lives through you and your love for him. As a mom I cannot begin to imagine what you are going through but your love for Kai is inspiring. Love, prayers, and hugs….

  6. Warrior mommy if writing helps you get through the day. Write away we are not in your shoes but just want you to do what is best for you and you perfect boy. Either way know people are praying for you and Kai and will hold you in our hearts.

  7. God bless little Kai. Thinking of you both. You are an Angel of a Mother. Kai was blessed with a loving Mother. Keeping him in my every thought & prayers.

  8. As I lay here napping with my son who is just a little younger than kai, I try to imagine the unimaginable. I can’t. I look at his hands, his eyes, his nose, his mouth. I hear him breathing. He reminds me of Kai. Though I know he will wake, I dont take this moment for granted. I thank you for that.
    Much love to you and Kai – An amazing family whose story has truly touched my life. Kai will forever be in my thoughts.

  9. Kai is a beautiful gift. A gift you will always treasure. So many thoughts and prayers are with you all, may the love surround you and embrace you.

  10. Kerri and Little Kai, my family and friends are keeping your family and you both in our thoughts and prayers. Our hearts are with you and sending all of you lots of big hugs, kisses, and much love! xoxoxo

  11. Hi Kerri and Kai,
    This message is for you both. Hold each other tight and say all the things that you want to say/think. I am glad you have the chance to say all the things you need to. Heading to mass at 5:00. My prayers will be ALL FOR YOU!

  12. I continue to pray for your family and your beautiful son. Wishing you peace and sending you all the love that you need. May Almighty God Bless and watch over both your son and you to give you all the strength you need to face whatever the future holds.Just know that you are not alone, many people praying with you.

  13. I PRAY FOR PEACE AND UNDERSTANDING FOR U ,I KNOW IT IS A TERRIBLE TO SIT AND WATCH YOUR CHILD SO SICK AND NOTHING U CAN DO BUT U CHERISH EVERY MOMENT HOLD HIM KISS HIM AND WATCH HIM AS LONG AS U CAN ! I PRAY HE WILL BE PAIN FREE AND TELL HIM WE LOVE HIM AND HE HAS TOUCHED SO MANY LIVES ,AND WE LOVE U KERRI ,GOD BLESS

  14. Kerri you must be so drained. I pray for your continued strength. God knew what he was doing when he chose you for Kai. GOD BLESS

    Jen

  15. My heart is breaking for you and kai, I cannot stop thinking about ye. What a strong mom you are and little kai is such an adorable little boy. Love prayers and hugs for kai you and your family. X

  16. Just want you to know how many people your journey has touched…So many people are praying for Kai to remain comfortable..and for you to have the strength to carry on, in the midst of such sadness….We are praying, candle is lit….Love you guys!!!
    alice,emily, lexie and Max

  17. As a mom, I can’t imagine what you and Mark are going through. The one thing I know is that you are both the best parents. I pray for all of you each day. You have not left his side and that mean the world to Kai even if he can’t speak I hope you both know he feels you love, it is no fair, I hurt for you. Just know that you have so many people praying for you each minute of each day…. God bless you

  18. So sorry that Kai had to be in pain for even a little bit today. Sending prayers that his fever stays down and he stays comfortable. Sending love and hugs to both of you.

  19. Know that there are many, many strangers out there who are holding you, Kai and your entire family in their hearts. Thank you for inviting us into this journey you’re traveling. You have taught me so much. I hold my children tighter, kiss their heads longer, and tell them of my love more than ever. You, precious Kai, and your openness have changed my life. I hope to honor Kai’s life by continuing to share my love for my children openly and freely.

  20. Holding you both and Kai in prayer, praying for strength and peace for Kai’s mama & daddy, and for peace and ease and comfort for Kai. Sending love and holding my little one close too.

  21. Hello.
    You don’t know me but in the scheme of things … So unimportant.
    My tears mingle with yours and my heart aches. I am sad and so angry that this awful disease is so prevalent. We have to end this.
    Please accept my blessings and hugs.
    Robin πŸ’—

  22. I have been following your blog for a little while now, and I’ve never been able to type, because there just aren’t adequate words. I can’t reach through the computer to give you a hug, and I am in tears after each post because it is so unfair that any child and parent have to endure this. I want to fix it and I can’t. Kai is beautiful and has the best Mom in the world. Hold him tight. Please know that so many are thinking of you always.

  23. Thoughts/Prayers/Hugs to you all ! I am sorry to hear that Kai had a bit of a downward spiral today, and glad you could make him comfortable. Don’t ever doubt yourself on what you are doing, or any decison you make for Kai. You are an amazing/strong/compasionate/caring/loving/giving/sharing/thoughtful Mom. Cherrish every minute/hour/second you have with Kai. I wish I could fix things for you but remember -sometimes we go through things that we don’t understand and will never comprehend, remember God will never give us more than we can handle.
    xoxox to you-Kai and your family-

  24. Like others who have posted today, Kerri, you and I are strangers. I came to this blog a little more than a week ago after following a link on Facebook; a friend of mine commented on your sister-in-law’s photo. My heart breaks for you, Kai, Mark, and the rest of your family. Each day I find myself reading and re-reading your most recent post, tearing up each time. You are in my thoughts so often during the day, especially in the quiet moments I spend with my son. He is 9 months younger than your precious boy and, though I don’t know Kai, I imagine that I see glimpses of him in my Wy. Since reading that first post I have worked to emulate what is so apparant in your words each day — the profound love you have for your beautiful child. I have practiced more patience; loved him harder; cherished him more; been more present. I will carry these lessons, Kai’s lessons, with me always. I know there are no words that can ease your pain right now; please know that you, Kai, and Mark are in the hearts and minds of many.

  25. Kerry – although I’ve never met you and just came upon your page through Peech the other day – I have read your strength, fears and inspiration over the last 2 days. Kai is such a beautiful sweet child with such an amazing support system. Your pictures capture his beauty and innocence. As a mother of 2 young girls, I have shed tears through reading your journey which is one no child or parent should ever have to endure. Your words have opened our eyes to the devil of pediatric cancer and at least for me, have inspired me to search out ways to help others. Many thoughts and prayers are with you, Kai and your family. We are all pulling for Kai! Hugs!

  26. Thinking of you, little baby boy Kai and Kerri, and hoping and wishing that you are comfortable and can hold each other tightly. Sending you love and hugs, Anja.

  27. I’m sending love & prayers. Wishing I could help relieve the pain and saddness you are feeling. Continue to hold him close. XOXO

  28. I don’t know you or your family, but came upon your blog and just wanted you to know that you are a couragous and inspiring family. Your precious little boy has touched my heart in the most profound way and I truely appreciate you for sharing your journey. May comfort and peace find you and your family and your beautiful baby!!!!!

  29. You all make me feel terribly small when compared to the love you all have for each other and the courage you have shown during this long battle. In particular little Kai is one tough little guy. I truly don’t have the words to express my admiration for you all (the whole family). Please keep holding him close while you can and know that lots of love is coming your way. Our love to you little Kai.

  30. I just came to know about this blog through Grafton Daily Voice. Very sorry to hear about Kai’s condition.
    We keep ‘Kai Rezendes’ and your family in our prayers, wish there is a miracle for him. This 2 year old boy did not do any wrong to face it. I can feel your pain what you have been going through as his parents, since my family was in similar situation when my son was diagnozed for cancer couple of years ago.

    Rao Kandukuri & Family

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