|Bennett mom teaches at the|
Casady Lower Division
Throughout this adventure, I've stayed most weekdays at the hospital and most weekends at home. With all the stories we'd heard about the meds, we didn't know what this weekend would look like. Since he'd been doing so well, we decided I'd go home Friday night. Well, he got so flustered that I decided not to leave that night which was super hard! I was looking forward to snuggling my girl in my own bed at home and she was ready, too. It was supposed to be Daddy's night with him. Everyone's expectations were completely shattered! The disappointment I feel when THIS lets Adeline down is so hard to swallow! My mom loved her through it and then we got to spend most of the day together Saturday. Please continue to pray for Adeline, too! Pray for her rest to be quality because the quantity isn't always enough. Pray for her heart and mind to be comforted with all the changes around her. Pray, too, for my momma who is a "rock" for all of us!!
Like I mentioned, today will be the second dose of the drug to suppress his immune system (so it won't attack the new cells when they get introduced later this week). The stories we'd heard about this process have been more daunting than the chemo ones. Fever, chills, nausea, vomiting--you name it--and it can hit at any time. For Bennett, that's a perfect storm for sending his electrolytes crazy all over again and it's what we've been praying against. Ben and I put off an anniversary date assuming it wasn't going to be pretty. His first dose started about 5 pm and was to run for ten hours. My mom and Ben were there for the start while I dropped A to spend the night with her godparents. By the time I got back to the hospital about 7:00, all was well enough that Ben and I decided to venture out while my mom stayed. Long story, short...we went to dinner, shopping, and both got to be home last night with the assurance Mom would call if things got extreme. I texted her at 8:30 this morning to get the scoop. He did have some reactions in the night but everything is more stable this morning. His fever started climbing about 3:30 and his heart/respiratory rate were off. He's had several supplements and the docs were quite pleased with how he looked when they rounded this morning. This is good news!
Pray this management plan continues working and we avoid PICU. The incision from the amputation continues to heal nicely. I think it's hard for him to really express how it feels. He wants it covered with either the gauze or a sock. The problem with the socks is that he is now keenly aware of the toe seam. It's soooo annoying to him right now and takes all kinds of effort to get it smoothed just right! We found a few thinner pairs last night so I'm hopeful they might be a little more comfortable. This is the start of the adaptations we'll make to maneuver through this new part of our world!
Everything is still on target for the transplant to take place Thursday. I'm a bit awed of God's timing for a blood drive to his credit happening at Casady on the same morning!! (7:30-12:30 if you are eligible to donate) We've been told he may need blood products everyday for a time after the transplant! Many others will need help that day, too, and every other day to come. I am eternally grateful for this mighty gift that has sustained his life over and over! I've never been a big hashtagger but I appreciate one that's shown up a lot lately.
So, #prayforbennett and Love like crazy.