November 30, 2019– Day +72, We Are HOME!

Just wanted to write a short update to announce that we are finally home! Although we had hoped to be home for Thanksgiving, we ended up spending the holiday at the hospital.

Bo’s team took him off the IV nutrition (TPN) on Tuesday, but wanted to watch his electrolytes and kidney function for a few days before sending us home. On Wednesday things looked mostly stable except for one electrolyte. On Thanksgiving that same electrolyte was still lower than they’d like, so they opted to keep him and give him a few doses of a med to raise the electrolyte.

On Friday morning our nurse came in and said she suspected that we would go home that day. It’s hard to explain the emotions that flooded us when we heard that it was actually the day we have been dreaming of for months. The tears flowed freely yesterday as we hugged our team and thanked them for the countless hours of care they gave to our boy and to us. It was bittersweet leaving—it’s the end of one very big, very hard journey and the beginning of a whole new journey—one of life and healing. I feel like this update isn’t complete without remembering our donor who made this all possible. To our precious boy’s donor—I’m not sure we will ever be able to properly thank you for the gift you’ve given our boy and our family.

Thinking back on our time in the hospital for transplant, there have been so many ups and downs. There were moments when we wondered if we’d be bringing our boy home at all and trusted that God had bigger plans for him than we could see. There were times when we didn’t know what to pray, and we leaned on your prayers and faith to carry us. Thank you for your faithful friendship and care.

Home has been BUSY. Moving back in after being gone for 81 days leaves the house feeling chaotic. Learning how to give all of Bo’s medications, hooking and unhooking him to his tube feeds and IV fluids, and changing his central line dressing has had its challenges. Overall, I’m so glad I can care for him, but it’s intimidating. Praying protection over him for anything I may not do correctly.

Bo is attached to his tube feeds for 15 hours per day and attached to his IV fluids for 10 hours per day. This makes it interesting as he explores the house. During the day, his feeding pump is in a little backpack and we just follow him around the house with it. One of his IV medications comes in a really cool pressurized ball that deflates over an hour—super neat. He also has his twice daily container of meds (pictured below).

Looking at our boy today, I see so much healing and joy. His homecoming was worth the wait. God has been faithful.

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13 thoughts on “November 30, 2019– Day +72, We Are HOME!

  1. Praise be to God.
    Good you are home and we pray that all the tubes and IVs will be able to be disconnected soon as Bo grows stronger and healthier.

  2. Wow wow wow!!!! Sooo happy for you all!! We’re feeling that joy and celebration!!!!
    We know you will be great home nurses, and we’re praying for healing for you all. May you be blessed with peace, rest, routine, mundane days and nights, and dull normalcy!!! All our love and hugs, and gratitude to God for this 2019 miracle.

  3. Praise the Lord!! Our small group have been keeping you all in prayer and will be so excited to hear your news! Many blessings to you and your family and thank you for sharing with us Bo’s journey. We will continue to keep you all in prayer!

  4. So happy for all of you! He IS a good, good Father! Our hearts are full as we see you finally going home. We know you will have many challenges ahead but you’ve already passed through the valley and He was and continues to walk with you and hold your hand! Praying for continued healing, recovery and growth for Bo! And for your family to be able to settle into “normal “ family life.

  5. So, so overjoyed for all of you; with genuine praises to the King of Kings for these favorable answers to many fervent prayers! May we all continue praying for complete healing in every health related area of Bo’s being and for your humble confidence as the Lord helps you with Bo’s home-nursing schedule…as well as a ‘new-normal’ family routine. Blessings!

  6. I was so excited when I checked today to see if there might be a new update! Praising God with you! What a journey – it’s been so awesome to see God’s faithfulness throughout all the ups and downs. Thanks so much for sharing with us. Prayers for continued blessings.

  7. Hoot. Hoot. Great to hear that Bo and you are home. You are an amazing family as you went through this trial with heart and passion. May God bless you and keep you safe in the palm of His hands.

  8. My heart just overflows for you all!! To be home!! May Jesus continue His powerful provision over all the needs, joys, challenges, and fullness that comes with being home. Much love to you all, loved the pictures too!!

  9. Wow…wow…wow!! Congratulations on persevering with God’s strength, your faith and the love of family and friends. Prayers will continue to cover Bo and your family at home.

    Blessings and love from Sherwood!

  10. Hurray!!! So exciting! Enjoy being home… praying for this transition, wisdom, rest, fun times, laughter, someone to clean house for you Nurse Mommy & Daddy, and complete healing. Love, hugs and prayers to each one if you. Aunty Janet?????

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