We had another quiet day and night, praise the Lord!
Our team has been anticipating needing to change the filter on Bo’s dialysis machine for close to 36 hours now. With the clots being filtered out due to his liver blockage as well as the platelets he’s constantly getting, the pressure in the filter keeps skyrocketing and sending warnings that it is nearly clogged and needing to be changed. Then, all of the sudden, miraculously, the pressure is gone and the filter functions beautifully. We overheard our nurse tell her supervisor that she was very confused by the filter and that it didn’t make sense! Lance and I looked at each other and laughed. It was incredible! It’s things like that that so clearly remind us of God’s care and power. I also overheard the doctors talking this morning about how amazing is it and that there’s no real explanation ?
Bo had a poop! Around 4am this morning he was becoming upset and at first we couldn’t figure it out. We wondered if he was itchy or hot or in pain. And then we checked his diaper and everything made sense. He has been sleeping so comfortably ever since and we are so grateful for answered prayer!
We were able to spend some time talking with our doctors yesterday to get some answers to help set our expectations for Bo’s recovery. The medical term for what he has is called VOD. I’m not seeing a lot of progress in his belly shrinking yet and the pressure from his belly is still causing some labored breathing and overall discomfort. I’ve been nervous that we should be seeing some physical results ASAP. We were assured that healing will actually be slow and that’s a good thing. It will be several weeks before his liver and belly return to normal size. They did say that all of the enzymes they look at daily in his labs are trending in the right direction and they are happy with his progress so far. They are also hopeful to wean Bo off of 24/7 dialysis sooner than later, and maybe put him on for several hours a day. We’ll see what these next few days hold!
Our nurses told us this morning that we will finally get to hold our sweet Bo today. I have missed holding my boy so much. He feels most secure in our arms and there have been moments where he’s moaning in bed and I come to him and a tear slides down his face as he closes his eyes. Breaks my heart. He is the bravest boy and we can’t wait to snuggle him ❤️
Bo’s total white cell count is up to 1410 today with an ANC of 220! His new marrow is working! Not only is this what we have been praying to see for weeks, but it also means that his infection risk goes down little by little as those white cells come back. We are also hoping to see some stability in his hemoglobin (red blood cells) and platelets as his marrow becomes able to produce these again. Bo has needed 6-8 transfusions of platelets PER DAY since coming to the PICU. The dialysis machine takes them and some get stuck in the filter and he’s just not able to retain as many as he would be if he weren’t on dialysis. And the liver med he’s on puts him at high risk for bleeding so they need to keep his platelets higher than normal. It’s a balancing act! Please be praying that his marrow starts producing these things in God’s perfect timing.
Thank you again for your prayers and encouragement. We have loved hearing from you and the ways that praying for our sweet Bo is increasing your faith, drawing you closer to God, and deepening your prayer life. We feel so humbled to have you battling for our Bo along with us. Thank you ❤️