Well, we are still in the hospital. I am happy to share that we are doing well–Bo is doing well and so are we. Once we grieved the passing of our initial going home date (the 18th), we were able to look toward home with eagerness and anticipation, not with impatience. That peace is only from the Lord!
Bo is working toward a goal to go home, so we aren’t living in limbo day to day. Bo’s doctor wants him off the IV nutrition prior to going home, so once he is taking in all of his daily calories via his feeding tube (or orally which would be ideal), we’re free to go. So far he’s able to tolerate 25ml/hr and he needs to be closer to 70ml/hr. We are hopeful that we could be going home next week Wednesday—our team thinks that goal is realistic! And even if we spend Thanksgiving here in the hospital, it will be special nonetheless.
We have a praise to report! Bo’s physical therapist signed off on him—he no longer requires inpatient physical therapy! She believes he has made huge strides and is back to where he was when he came in for transplant. They still want to see him occasionally in the outpatient setting but just to make sure he continues to meet developmental milestones. He still isn’t quite walking yet, but they believe he’s going to take off once we get home!
One good thing about being here longer is getting to be a part of the community in our unit. There are several other babies with AML like Bo and we have been able to connect with their families. Everyone is in a different stage in their journeys and it has been encouraging to meet others walking a similar road. Most evenings we all do laps together around the unit and it looks like an adorable, bald baby parade!
Will you be praying for Bo’s gut to continue to heal? He is still experiencing nausea, vomiting, and diarrhea as his gut acclimates to being used again. Will you also pray for protection over his liver as he is still needing the IV nutrition? Since our livers were never meant to do the job of our gut, the IV nutrition can be hard on the liver. And since Bo’s liver was damaged by the chemo (the cause for our PICU stay), his doctor is especially protective over his liver and wants him off of the IV nutrition as soon as possible. In order for that to happen, he needs to start tolerating feeds through his feeding tube. Will you be praying that happens soon?
We are so grateful for your faithful prayers over our family. Updates have been less frequent lately and it’s because Bo is doing well and he’s keeping us very busy. I plan to continue posting once we’re home, most likely every Friday—a brief update of the week and ways you can continue to partner with us in prayer. We are so humbled by your care and love for our family and pray that we can thank each of you personally in the coming months. I pray the next update you read is written from home ❤️