Happy Easter! It has been a strange feeling to not be at church for Easter Sunday or for the last four months. Thank God we worship He who is not legalistic.
Again, Reece has been making great improvements! Yesterday, I arrived at the hospital somewhat frustrated with the perceived shenanigans from Friday night. Apparently, between the evening nurse and Respiration Therapy (RT) there was major confusion on what oxygen Reece needed to be on overnight. Despite Terry’s best efforts to bring them up to speed (and no concerning signs from Reece himself), they managed to make decisions that reflected setbacks in his breathing. He had a 45 minute fever spike Saturday morning, which led the doctor to say he wasn’t going to visit home yesterday. All the overnight data that the doctors were looking at did not paint an accurate picture of how well Reece has been doing. I was able to discuss my concerns with the doctor (who just started rounding on Thursday, so he hasn’t seen Reece for more than a couple of days) and he agreed that Reece was doing well, but needed to wait another day to go home for a visit. Additionally, he has been keeping a close watch on Reece’s skin as I explained in my previous post. He thought it looked maybe slightly better Saturday versus what he saw on Friday. (As with all the other BMT docs, I do like this doctor. He is just getting familiarized with Reece.)
We were all prepared to wait the extra day when who comes into the room but Reece’s assigned physician (Dr. S)! I should explain how the “doctoring” works around here. Each child is assigned to a BMT doc who is that child’s long-term care doctor. All the docs on the BMT team take turns rounding up on the floor for a two-week stretch. So every day we are not talking to Dr. S, although she visits him quite regularly. She was actually the attending physician on the floor for the last couple of weeks, which was really nice. On Thursday, a new doctor rotated on. With his rotation, we have met every single doctor on the BMT team, as we have been here for nearly three months. It’s actually nice knowing who all the key players are, but I digress. Anyway, Dr. S happened to be “moonlighting” last night (meaning she was taking the night shift for one night) and popped in to see how we were doing. She looked at Reece’s rash and said it looked much improved from Wed, which was her last day rounding on the floor. She addressed several things that I had questions about in the long-term. And…she told us she was fine with Reece going home for a few hours yesterday! Had it not been completely inappropriate given the relationship, I would have kissed her!
So, we packed Reece up and made the 15 minute drive home. It was somewhat strange to see him in his car seat. I liken it to taking a newborn home; I felt paranoid about every little thing. We got on the highway and I told Terry the ride seemed really bumpy. Then Reece broke his silence and said, “I don’t mind the bumps!” We got him in the house and he walked to his room. When he saw his bed he nearly ran over to it, almost falling down, and climbed up on top. He sat on his bed and smiled. Then he decided he wanted to rest on our puffy couch downstairs. I made him mac and cheese (his choice) and he also ate a few bites of fresh strawberry. As I was up in the kitchen I could hear Terry and Reece chatting on the couch about whatever they were watching. It felt awesome to make him something to eat and to hear his voice drifting from parts of our home. A month ago to the day, Reece had his hemorrhage and I remember thinking, “He may never get to go back to our house again.” Having him in our home is a victory in and of itself. Reece’s demeanor was so much more like himself. He wasn’t running around and playing, but he was talkative and engaging. He was ready to go back to the hospital after 90 minutes of being at home. When we hooked him back up at the hospital his stats looked great!
My mom stayed overnight with Reece last night and he slept for periods of time, but also wanted to watch “Cars 2” (one of my least favorite movies) in the middle of the night. Apparently, he was talking to my mom through the whole movie, discussing how he wanted to go back home, and sounding much more like himself. Many people have stated that the home visits are so encouraging to the kids and it really motivates them to work hard in order to get home. Reece is no exception to this.
Despite a small fever spike in the middle of the night, Reece is able to go home again for a few hours today! It sounds like we will be in classes early this week to discuss caring for Reece’s line and administering insulin at home. He will likely start subcutaneous (sub-cu) injections for his insulin (aka “pokes”) starting tomorrow, as we will need to do those at home. He will transition tonight to get down to only 12 hours per day of nutrition through his line. This is where we were at a month ago before Reece went down to the PICU. No one is discussing the d-word, but everyone is preparing for it. Don’t get too hepped up, yet, as we know to take it a day at a time.
With this latest progress and my feelings about Reece coming home I am realizing that while the doctors have their own milestones to go on–mostly noted by days post-transplant–we will clearly have our own milestones. My milestones are much like that of any parent raising a child…firsts. In this context, it’s his first WBC count, his first trip home…and I have many more that I am keeping in mind.
We covet your prayers for continued improvement in all things (including Reece’s GVHD rash), no fevers, no more complications, health and healing, remission, discharge, life.
Have a blessed Easter. I’m celebrating Reece today and I’m celebrating a risen Savior.