Tonight all that has changed. Nurse Ashley noticed that Max was a little warm, which is fairly normal for him these days. So, she stripped him down to his diaper and cuddled him for a while, or at least tried to. Max was inconsolable. She said she has never seen him like that before. Over the next couple minutes she had to turn his oxygen from 32% to 65%. A significant jump. She also took his temp. which was 40 (104). NOT GOOD.
The increase in oxygen takes away the opportunity to order a home vent. Mark and I feel...well...I don't know how to feel anymore. Every time anything good happens with Max something comes along and crushes it. One step forward--ten steps back.
Please pray for Mark and I. We just want our family together. Our boys have gone through soooooo much. It is becoming harder and harder to deal with these set backs. Sometimes I think we are going to celebrate their first birthday in the NICU. I am...out of words. After seeing all the people today at my Grandma's visitation and telling them how great things were........ I told them I saw a light at the end of the tunnel. The light is gone.
I just want my son home. I just want my son home.
I know God has a plan for my family. I trust that my son will come home one day. I have faith that the 4 of us will all be together. I believe in a God that heals---Heals my sons lungs and my tattered heart. I know these things to be true, and yet I struggle with it all.
Thank you for your continuous prayers and support over the last +/- 9 months. Our family has been so blessed by it. Thank you for showing me just how truly amazing the family of God is.
With much Love and Thanks,
Kate
Kate and Mark, we are still praying in earnest for Max, Wes, and both of you. I wish you could hear the honest prayers of the kids when they pray about things they don't really understand. It can almost bring tears to your eyes! We want you to have your family together-and we want to have our (extended) family together. It sucks having birthday parties, etc without you guys around! I know I'm being a little selfish... I'm praying for Max's quick bounce back from whatever this setback is!
ReplyDeleteLove,
M (&BIKLG)
Praying Praying Praying, Mark and Kate!!! We love you!
ReplyDeleteChris
Still praying for your family, and trusting that God does have a plan. Mark and Kate you are amazing. I don't know how you do it, you are a true testimony to us all that even though life has been hard, and you are weary, tired, and sick of this you are still holding on to Jesus.
ReplyDelete....praying.....
I'm so very sorry that Max has had yet another set-back. We'll keep praying for God's healing and for strength for all 4 of you! Love you guys! Amy & Brent
ReplyDeleteWe are praying for Max and your entire family! We pray for strength for all of you! God bless!
ReplyDeleteBryan, Renee, Dakota, and Colten Breuker
Sending up many prayers for Max and for you and Mark, there is nothing harder than watching your child be sick and have a setback. Praying that Max will bounce right back from this and get back on the road that leads home!
ReplyDeleteTina Jacobsen
My heart aches for you. Just when everything finally started to seem within reach...another set-back stands in the way. Hang in there...keep taking it one day at a time, one breath at a time if you need to. I hope you can feel all our love and hugs from here. You're always in our thougths and prayers.
ReplyDeleteMarie and Chad
I am so sorry to hear this discouraging news. You are in our prayers and our hearts go out to you guys.
ReplyDeleteKelli (Schonewill) TenHaken
Praying for you all! I get tears in my eyes thinking of what you two are going through! I totally don't understand what it is like to be in your shoes. I do know what it is like to watch you child and know that you can't do anything to help the pain. I pray that the Lord will provide you with everything you need! I pray for health for Max & Wes and strength for you and Mark and I pray that someday you will all be HOME TOGETHER!
ReplyDeleteKate & Mark, my heart goes out to the four of you! I continue to pray for healing for Max! I continue to pray for Wes too, for relief from his issue with retching. I pray for encouragement for you. I pray that you will be together as a family, sooner, not later!
ReplyDeleteLarry
OHhhh Kate and Mark - my heart hurts so much for you...this is not right! You have EVERY reason to be totally frustrated...
ReplyDeleteFather God, You are the God of Healing - Lord I plead for Max - your healing hand is so needed for this small child of YOURS...isn't it enough Lord? I know NOTHING is too difficult for you, your word tells me that...on that truth, I claim healing for Max. For your glory and for this family to finally be home together I boldly ask this request. Amen.
Praying earnestly!
pam
Kate and Mark,
ReplyDeleteWe are praying for you 4....how heart breaking and exhausting this must be for you. We pray for peace, strength and for healing . May God be gracious to you, and bless your family,may his face shine upon you. May the boys bodies become whole so you can have your family all home. Amen
PS your pictures of the boys are wonderful, they are so precious!
jody and carl
A prayer for you both..."O God, from my youth you have taught me, and I still proclaim your wondrous deeds. So even to old age and gray hairs, O God, do not forsake me, until I proclaim your might to another generation, your power to all those to come. Your righteousness, O God, reaches the high heavens. You who have done great things, O God, who is like you? You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again. You will increase my greatness and comfort me again." (Psalm 71:17-21, ESV)
ReplyDeleteMark & Kate -
ReplyDeleteSigh...
I know there is little I can say that will be of any consolation at this point. Know that my heart hurts for you. I will continue to pray for your family. I know how badly you want to have all 4 of you home together. Our God is a God of miracles. I will pray that He work one with Max.
Much Love!
Dave & Abi Lamar
I'm so sorry Kate. I wish there was something that I could do! Just know that you, Mark and the boys are always in our thoughts and prayers. You have had quite the journey...one I can't even imagine. This will one day pass. I pray that you will see the light again soon. Love you!!
ReplyDeleteI continue to pray for all of you daily! I hope Max will recover quickly! Love you all!!
ReplyDeleteLindsey