We need your continued prayers. Things are getting harder, and it has been excruciating. Although what Bo is going through is to be expected, the reality of it all is almost too much to bear at times.
Bo has started retaining fluid all over his body. It is most apparent in his abdomen, as it appears hard and distended. We are told this is a normal part of transplant, however Bo isn’t responding to the diuretic as hoped. They are increasing the dose today, so we are praying he starts responding well. One of the risks of the fluid staying on is that it can settle in his lungs. We are starting to hold him upright during the day so that he isn’t laying down where fluid can settle, but prayers for the fluid to leave his body are needed.
We started Bo on a pain pump yesterday so that he can get a low, steady dose of pain medicine round the clock. The idea is to have more aggressive pain management and less ups and downs. At first, we thought the dose was too high since all he really did was sleep, so we asked them to turn it down. However last night was really tough and we felt like we couldn’t stay on top of his pain at all. He cried most of the night and we held him, prayed, and pushed the button on his pump. We (along with his care team) are trying to figure out the right dose for him and think we’re closer to getting it right. To be honest, after watching him last night, I might be OK if he wants to have a sleepy few days to get him through this hardest part. Please pray for comfort for Bo over these next several days and for wisdom for us and our team as we try to find a good balance for his pain management.
Last night, in the midst of Bo crying, he pulled out his feeding tube again. Luckily it didn’t come all the way out, so we were able to get it back in. They weren’t able to confirm if it’s back in the right place, so they are doing an x-ray this morning to make sure. Hoping we can resume feedings through the tube instead of moving on to TPN (feedings through his IV). Ideally we’d prefer to keep his gut working, but we want to do what his body needs. Prayers for wisdom as we figure out what to do are needed.
I’ll be honest–this is harder than anything I could have imagined. Watching my precious baby boy suffer like this has absolutely broken me. We still have so much hope and comfort knowing that God is walking with us in this valley, but we are still in the valley and the valley is dark. We know that we will come through this soon, but I still can’t see the light at the end. It’s hard not knowing how much longer Bo will suffer. Will you pray for continued strength as we face each moment of the coming days?
We do have a praise to share! This morning we learned that Bo doesn’t need platelets! This is the first day that they have stabilized in 7 days. Our team decided that he needed platelets twice a day instead of just once and that has really helped. He’s been getting them morning and evening. There’s a chance he might need them tonight, but for now, we are celebrating the answered prayer of Bo’s platelets stabilizing!