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.