We have wonderful news! Bo’s CMV results from Thursday came back as weak positive, which means that there were only traces of virus detectable, but not a quantifiable amount. Today’s results already came back and the virus is UNDETECTED! Glory to God! Our team wants to see two undetected results before taking Bo off the med he’s on, so hopefully that will happen on Thursday or Friday! We are so happy!
Our weekend ended up being a little tougher than we had hoped. Bo has been needing platelets daily, however that is an improvement from needing them multiple times per day. During his transfusion yesterday, he had a reaction. Thankfully, he has never had a reaction before, but it can always happen and the risk increases the more he received transfusions. He ended up getting splotchy (rash) but it seemed to get better with Benadryl. They will now monitor him more closely during his transfusions and give Benadryl before no matter what. We have continued to experience platelet shortages, and Bo has had to receive unmatched platelets twice so far. Interestingly enough, the platelets yesterday that he had a reaction to were his exact match, so it can happen anytime.
We have begun weaning Bo from his pain pump and a nausea med. Both require weaning because withdrawal is a risk. As we wean we do notice some changes in Bo’s comfort levels, but we are trying to do it as slowly and gently as possible. Thankfully we can take our time because weaning isn’t what is keeping us from going home. Please be praying for this to go smoothly and for Bo to adapt well as we bring him off both pain and nausea meds.
Bo’s kidneys are slowly continuing to recover. He is still requiring daily dialysis and it doesn’t look like he will be able to tolerate doing it less frequently yet. He is starting to have more frequent wet diapers, but they are very small amounts. Anything is better than nothing! We are learning so much about our bodies and how beautifully complex they are. Most recently we have learned about how our kidneys regulate our blood pressure (BP)! Because Bo’s kidneys aren’t working well right now, his BPs have been very high. His BP tends to drop into a normal range during dialysis and then creeps back up shortly after. It’s our understanding that as his kidneys recover and start producing the hormones that regulate BP again, his BP will actually be higher as his body adjusts to the hormones again and hopefully will come back down in time as things regulate. Isn’t that amazing? The more we learn about our bodies the more in awe we are of our Creator. We truly are fearfully and wonderfully made! Please be praying that his kidneys continue to heal!
Bo’s liver is also continuing its slow recovery. This one is harder to see as his belly still looks so big and taut. Some days it looks bigger than others, but his team reassures us that his labs are showing improvement. Please be praying that his liver continues to heal and that it starts to shrink back to normal size.
Your constant encouragement keeps us going. It hard to believe tomorrow will be 50 days of being in the hospital. It’s definitely felt as long (some days longer), but it is building endurance in us that we are grateful for. If I could describe how I feel in one word, it would be exhausted, but not the kind of exhaustion a good nap or night’s sleep can solve–it’s deeper. But we are truly experiencing the strength that comes from Christ–when we are weak, He is strong. And He has given us His people–YOU! We couldn’t do this alone and are so glad that we were never meant to. We thank God for each of you daily ❤️