I’ve been holding out on you. Not because I wanted to keep Justin’s progress a secret, but subconsciously, I thought if I said it out loud (or in print), that I would jinx it. BUT – WE ARE HOME!
Much to our surprise, Justin went home a week earlier than we had been told – on Monday March 27th we packed our things in room 54, once again, and headed toward home. I can’t even begin to describe how happy I was to be leaving WITH Justin – it had been over six weeks since I had him in the car with me. We were nervous, but so ready to start the next phase in his recovery.
The antiviral medication Justin had been on was making headway on the CMV virus, but the numbers continued to bounce around – this meant that I would be administering three separate IV medications to him daily instead of the one IV I had been trained to administer over a month prior. It still amazes me that caregivers are administering IV medications to bone marrow transplant patients every day, it seems like something that shouldn’t be trusted to someone outside of the medical profession. After another session with our visiting nurse, I felt confident in my ability to safely connect Justin to his medications and quickly caught my groove.
Four days after discharge, Justin had a clinic appointment with his outpatient team. This was the first time he had blood work done since leaving the hospital – it was the moment of truth. If anything was wrong, he would be going back to the BMT unit and not back home with me. I was definitely nervous. Walking around the hospital was overwhelming for Justin’s developing muscles – he was exhausted before we even made it to his appointment. Taking a nap in the exam room, we waited for the lab to process his blood and give us an indication of how he was recovering at home.
His counts were phenomenal. His platelet count had more than doubled, his white blood cell counts were in a “normal” range, and his blood levels were holding strong. It was the best-case scenario. A couple of adjustments to his medicines and we were on our way – HOME.
Leaving that first appointment was incredibly liberating. We were only in the building for three hours, and it opened my eyes to the fact that being home was going to stick – we weren’t just waiting for his next hospital stay. I felt relief wash over me as we pulled out of the parking lot and talked about how we would spend the rest of our day.
We’ve been back to the clinic one additional time, and Justin’s numbers continue toremain stable, his platelet counts are continuing to climb. His CMV numbers are slowly decreasing, which means he will continue with an additional week of the foscarnate, but the improvement in his blood counts means he can also balance that with the pill form antivirals. His team is continuing to find the balance between tapering the steroids (that feed the virus), and administering antivirals that are either damaging to the kidneys or the bone marrow. It’s a delicate line to walk, but progress is being made.
Being home has been great for both of us, Justin seems to get stronger every day, and we are both resting to make up for the nine weeks spent in the hospital. We’ve spent hours watching Netflix and catching up on our DVR’d shows, snuggling with our four legged children, and slowly reintegrating ourselves into the real world. There’s no place like home.