|(Giovanni climbing over driftwood with Mommy, La Push, WA)|
We ate and relaxed that Wednesday night, the first night home from the hospital. Then it was time for Giovanni's first round of meds at home. It went smoothly, but with it came the sensation of the beginning of a race.
I haven't run in a race since childhood, but I do like running (when I get the chance). All of my son's home health care carried the intense need to stay focused and strong, to persevere and to not give in to temptations of self-pity or worry or despair. It was straining the muscles, looking straight ahead, not to the left or right. It was breathing in rhythm to footfalls that couldn't stop, doing everything I could to keep going.
Giovanni was not allowed to have Tylenol because if a fever came, it could not be masked. If a fever hit 100.4F, we had to take him back to the hospital.
We were home, but he required constant vigilance and prayer. Fevers would inch up to 100, and I'd pray and lay my son at the foot of the Cross. We asked for mercy for our son and grace for Antonio and me to accept whatever God's will brought. Each night I laid my son on the altar, trusting God's goodness no matter what. If I didn't do that, I couldn't sleep, and I needed sleep to do the duties that had been set before me.
The Infectious Disease doctor seemed not pleased that Joseph was out of the hospital so early. Our first follow-up with her was excruciating. She wanted to drive home that my son almost died. She emphasized that his sed rate was 120 when it should've been under 20. Another indicator for infections was over 10 when it should've been at 0.8. She seemed mad that Giovanni was happily sitting on my knee looking at a book. She didn't seem to like things going against science.
The home health nurse who came on Mondays to draw blood and check out my son's vitals was awesome! He was a lot of fun and was easy going. He never asked but assumed that we were Christians and would remind me of encouraging Bible stories which he told with good humor. He was a blessing.
A church member owned and managed a maid service, and he donated the service for a deep clean of our home. Antonio then decided to hire the maid service to make it easier on me. Everything had to be kept scrupulously clean.
My little toddler had to have one medicine infusion three times a day, and the other was twice a day. It was timed so that I administered the medicine only four times a day. The antibiotics were delivered in a large box, once a week, packed in dry ice. They were kept in the refrigerator, and I had to remind myself to take the medicine out so that it would be at room temperature for infusion (cold medicine in the veins is uncomfortable and can even be painful).
I washed my hands, carried a designated, cleaned tray to Giovanni with all the equipment I needed, disinfected my hands with sanitizer, put on my gloves, cleaned his port, popped on the medicine, and set the timer. Then clean, sanitized, and gloved my hands again, popped off the medicine, and threw it away.
I started running on the treadmill daily; it was a relief to pound out tension with running. I made sure that I got to bed after his last infusion of the day (which was over at 11 pm) and that I was up at 5:30am so that I was alert enough not to mess up his infusion at 6 am.
My husband and I continued our time of Bible and prayer each morning. I took a morning break in a corner off the kitchen to read Psalms and pray. I lightened up on the home school work, but I kept it up as much as possible to give the older kids a sense of the old routine.
We rarely went out because influenza was rampant and the last thing Giovanni needed was a virus of any kind, let alone the flu! A friend coordinated some church members to come over and sing and pray with us. It was wonderful!
My brother, Glenn Allyn, surprised me with asking me to sing Schubert's Ave Maria for his movie, Coffka. Antonio and the kids were as excited as I was! Joshua Meyers was the composer for the film, and he made an accompaniment MP3 which I played on my iPod while I sang into the USB microphone. I got sick Monday (January 26, almost three weeks after we got home) but I recorded anyway which thankfully worked out!
I rested in between duties on Monday and Tuesday in hopes that I would recover from my sickness without much fuss. I woke up feeling so much better on Wednesday, and I had no inkling that things were about to change.