We are being discharged from the PICU tomorrow!
They started the conversation with us last night and I couldn’t believe it. Bo is making some big strides lately. It’s hard for us to see how much his body is healing internally because we don’t understand all the tests they run daily, but we are being assured he’s doing good. He still seems so fragile to me. He’s nowhere close to the boy we came to the hospital with, but he has weathered a major storm and recovery is going to take time.
I never thought I’d say this, but I am sad to leave our amazing PICU team. Being in the PICU has been one of the most stressful experiences of my life, but the care we have received has made it bearable. The staff in the PICU are deeply passionate about what they do, so incredibly smart, and genuinely love kids and their families. Our boy was so very sick when he came to them and they have walked this long, hard road with us. They are so happy to see the progress he has made and are joyfully graduating us back to our oncology unit. We can’t wait to come back down to say hello once Bo is back to his crazy, energetic self!
Bo is doing very well on intermittent dialysis (also called HD or hemodialysis). Right now they have him on an every 24 hours schedule, and they run him on the machine for 3 hours. A major victory is that Bo has had 2 wet diapers today! This is exactly what the kidney team wants to see and it means that his kidneys are starting to recover. As he continues to improve and have more wet diapers, they’ll change his dialysis schedule to every other day, then a few times a week, and then NO MORE! We aren’t sure how long that process might take, but we are hopeful to see steady improvement over the next several weeks.
We heard that the CMV fighter cells should be here by Friday or Monday. I am so ready for this CMV to be taken care of for good! Please be praying for the cells to work quickly and for Bo’s marrow to recover from the medicine he’s been on to fight the CMV.
I am having trouble finding the words to express the gratitude I feel for the progress we have seen in Bo this week. These last several weeks have felt like some of the darkest and lowest of my life. There have been moments where I physically felt like I was being pressed from every side and I wasn’t sure how much more I could take. Watching our boy suffer and waiting to see how God was going to provide has been a surreal experience. I was telling a friend today that I have read Psalm 23 so many times in my life, but it has never been so real to me as it has this week. God has proven to be every bit as good as He says He is. He is a good, good Shepherd. He has cared for Bo so tenderly, has brought him (and us) through some of the hardest, darkest valleys, and continues to sustain him day by day. I am in awe witnessing firsthand His provision and care. A good friend encouraged me to find ‘stones of remembrance’ (Joshua 4) throughout this journey, and I can testify that this is one. God has been so very faithful to us. May we never forget his power, compassion, and care.
I want to thank all of you for your prayers that have carried us these last 2.5 weeks in the PICU. Your love for our boy has brought so much comfort. The texts, calls, emails, and comments all came at moments when we needed encouragement to keep pressing in and pressing on. Some of you showed up to the hospital without being asked and sat with us, prayed with us, brought food, and held our boy so we could sleep, shower, and eat. Your physical presence has meant so much and we are grateful. Those of you far away have carried us with your prayers and constant reminders that we are remembered. Reconnecting with so many of you has been one of the greatest blessings. We have made so many new friends on this journey as well. Our church family has come around us in ways that have astounded us. Some of you we have never even met have brought meals and sent care packages. We have been so blessed to be a part of the family of God and to receive the care that comes from it. I know for many (myself included) accepting help or asking for it is hard. This journey has forced us to acknowledge our limitations and weaknesses and God has provided everything we have needed through His people. Thank you for faithfully walking with us in all the ways you are able. Near or far, we feel your love. We are excited to share in celebrating God’s victories with you!