Oh yes, it’s true, Reece slept in his own bed last night. Three months to the day after Reece’s transplant, we made the trip back to our home. We weren’t certain that yesterday would be the actual day, but it was! And after 102 days of sleeping in the hospital, all Reece said when asked by the nurses if he was excited to go home was that he was “going to actually sleep at home tonight!” I would love to report that it was a restful night, but I am running on less than four hours of sleep, so please forgive me if my post isn’t reader-friendly. Pregnant women aren’t designed to function well with this little amount of sleep.
I’ll begin by saying that Reece–we all–had a very good weekend. Reece visited home both Saturday and Sunday. These home visits were slightly different as my parents and Britta were in the house with us. Reece and Britta were absolutely adorable together! When we went to the hospital to pick up Reece on Saturday, he wanted her to get in his hospital bed. She did so and I will never forget how much they enjoyed seeing one another. We put Britta in bed with Reece and he was beaming. He even leaned over and kissed her–out of the blue! It brought tears to my eyes…we asked him to give her a kiss again later and captured it in a photo. They were able to spend time together at home as well.
On Sunday, upon leaving the hospital, Reece requested that we go to Chipotle and eat in the restaurant. Since our primary physician has basically given us the “go-ahead” on this (with many caveats), we decided that we would try it, since Reece was requesting to do so. We ate in a completely enclosed patio area where no one else was eating in, clorox-wiped the entire table and chair down, stayed only about 10 minutes (since Reece was ready to go)–all around the un-busy hour of 3 pm. It worked out well, but was somewhat nerve-wracking. Both the attending physician that is on and the nurse were surprised and maybe not entirely happy with our decision. Every doctor has a different opinion on this. However, we have to begin to do some things and we felt it was the right choice. I told the doctor on Sunday, that I was going to plan on Monday for discharge. He was non-committal, but Reece’s weight seemed better-managed and I felt strongly that someone needed to pull the plug.
I wasn’t in rounds yesterday due to my OB appointments, but it sounds like it was pretty non-eventful. Even the discharge discussion was slow-going. Yet by the time I arrived at the hospital around lunch, the wheels were moving to get Reece out of there. What a process it was! We had an oxygen vendor to discuss his home oxygen, a pharmacy consultation to discuss his 24 meds he went home on, we took him up to clinic to get his weight on the scales up there (to ensure consistency), Reece was given his one IV med so that we didn’t need to deal with it at home last night. We practiced checking blood glucose on our home glucometer and finally, we made it out the door around 6:45 pm. Our nurse that discharged us just happened to be the nurse that admitted us back in January–it was fun to have her as our last nurse in the hospital. On our way out of the room, many of the nurses gathered to wish Reece well. They sang a discharge song with noisemakers, similar to what you might hear as a birthday song at TGIFridays. They made a tunnel to push Reece through on his wheelchair. I think Terry and I both felt we were in the clear as far as tearing up. But then our nurse stopped us and crouched down to look Reece right in the eyes and wish him luck. Tears for all of us were unavoidable. I so vividly remember our first day, having her get Reece all checked in, feeling uncertain about all that was about to transpire. To be on this side of transplant is such a relief. So we walked out tearfully happy and made our way home. Here’s the photo taken of us right before Reece put his mask on and got into the wheelchair.
We knew it would be a lot of work when we got home, but it is a LOT of work. Just his medicines alone are a lot of work. It’s a little different from giving a dose of Tylenol. First, these meds are essentially keeping him alive…treating GVHD, suppressing his immune system to prevent more GVHD, warding off infections, keeping his nutrients level, helping his organs function correctly. Not only are they timed differently throughout the day, but checking and double-checking is important. Thankfully, he only has one IV medicine and he is not on TPN. Additionally, he has blood glucose checks. We had the oxygen tank people come by later last night and the medical supply people drop off line maintenance supplies even later. By the time we got everything organized and set-up, Reece was completely tired out. I didn’t make it to bed until 1:30 am (after Reece’s nightly glucose check) and awoke at 5:30 for his early morning glucose check. Thankfully, Reece’s doctor told us at clinic today that we didn’t need to check his glucose overnight any longer. Thank. Goodness. Although when we have a newborn in another week, we’ll likely be up anyway!
Reece slept pretty well last night, although he was still up in the middle of the night chatting with Terry and getting used to his “new” surroundings. We were at the clinic mid-morning, which provided more activity level than he has experienced in months. If we can manage to stay out of the hospital and keep up the outpatient routine, I suspect his recovery will take off.
Reece has another marrow engraftment study that will be two weeks from now. We are holding off due to baby’s arrival next week and to give Reece’s lungs some additional time to heal prior to going under anesthesia. We did not do his Day +60 engraftment study due to his lungs. I suspect all will turn out well, but it is obviously nerve-wracking for us as this will continue to reinforce that Reece is in remission.
We appreciate your continued prayers:
- Praise for discharge! What an answer to prayer!
- Protection from infection and complications
- Complete healing of lungs/no more issues with fluid and weight
- Remission and life