Home Sweet...Hospital
My attempt to keep Jed in my bubble wrap has not gone as expected. Over Easter weekend Jed ended up back in the hospital. We have been informed that this constant in and out of the hospital is going to be our “new normal” at this point in the journey. There is still hope that his lungs would stay stable at a certain point, but with coming home his lung function has dropped again, they are now at 14%. He is able to use the CPAP/ BiPAP machine in the hospital which gives his lungs relief, unfortunately he’s CO2 levels don’t qualify him to have this machine at home through insurance.
We are praying that this time back in the hospital will give his body the boost that it needs to wait for transplant. We currently don’t know how long they will keep him in the hospital this time. His levels and strength need to stay up in order to receive a transplant. We realize that this is the end stage of life with Cystic Fibrosis. It is a reality we have always been aware of, but knowing and walking through it are two different things.
We are thankful for the time we get as a family whether in or out of the hospital. With the physical limitations on Jed our family time has looked differently, yet the kids did not complain when they got to watch the new Star Wars movie in our bed and eat snacks on a school night. We do ask that friends do not visit the hospital without checking first, I want to make sure he gets the R & R he needs. Jed is always up for visiting and talking with people, so it needs to be limited. Thank you.
We are daily reminding ourselves of the truth that God’s love does not change based on our circumstances. We continue to look to the love of the cross. Our Easter may not have gone as desired this year, but the very first Good Friday and Resurrection Sunday display the depth of God’s love for us and others. It is only when focusing on the trails of this world that we can lose sight of how profound that love really is. Jesus defeated death so we now have nothing to fear.
Comments (21)
Love to you all!! In our prayers all the time!!
Sending Love from MN! Y'all are in our prayers Daily!!
((((( <3 ))))) We continue to pray for ALL of you! God is in our circumstances....always!!!
You two look good together. Just sayin'.
We are praying for your family!! May God continue to speak His words of hope and life to you all as you await His provision and timing.
Praying for all of you!! The statement about knowing this woukd be coming and walking through it being totally different things makes complete sense. Love you all and will pray for peace and comfort. Sending hugs!
Praying for your sweet family during this time of waiting. "The world says, 'Laid aside for illness.' Christ says, 'Called aside for stillness.'" (From Jill Briscoe's book Spiritual Arts.)
Kendra, if Jed had a cpap/bipap machine could he be home? I'd so pm or call me 920-585-2700
Praying for you and crying with you. We have Gary's cpap that he hasn't used for years. Would you like to check it out to see if it would meet Jed's needs?
Love and prayers 😓
Stay strong!! We are all praying for you Jed
Praying for you all. My heart breaks for you all...but I know our God is a big God and that He works all things together for His good. Love you all so much! Which hospital is jed at? UW? I'd like to maybe send him a card.
Nancy and I are lifting you up in our prayers. We are praying that it is God's will for Jed's time in the hospital to be restorative and that his body will be ready for a perfect transplant to come his way.
Our hearts and prayers are with you.
Jed, Kendra & family: So sorry to hear this. Keep your heads up and think positive. Good things will happen with the Lord looking over your shoulder. I pray that he stays strong for when the match comes for him. I will keep the family in my prayers. Hope to hear the good news real soon. Take care!
Praying continually for Jed and you and your whole family. Thanks for keeping us updated.❤️✝️☀️
Praying for you guys. Love this: Jesus defeated death so we now have nothing to fear. Nothing to fear. God's got you all. Love you!
Praying, Father in the Name of Jesus ... Jed, Kendra and family, you are an inspiration to the body of Christ.
Kendra and Jed My heart goes out to both...Prayers. Jacquie
Concepts and reality are very different. Praying for the transition between the two. Praying for Jed's health. Praying for family time. And praying for all the living souls Jed is touching. Love you all. Colleen
Sending prayers for strength and grace for you and Jed and the family. Thank you for the update.