We slept reasonably well on Friday night, under the tender care of our French-Swiss nurse, Valerie. A woman I felt sure would have been my friend even without the need for professional courtesy. After a night of fluids my little guy had the energy to scream at the vampires who came for a sample to monitor his progress. “No! No! Leave baby!” he exclaimed. It made me both very happy and very sad. When he’s at his worst he doesn’t talk, but hearing him tell them to leave the baby alone was very sad.
We met with the attending physician who was just starting out his 24 hour shift. It was clear that Boy Blue’s case was unusual enough that the residents were unequipped to handle the mystery, and we saw very little of them after our first hours on Friday. Even Dr. Grybauskas was frequently trumped, by the nephrologist whom I never met, but was also monitoring Boy Blue’s progress by blood work. On Saturday morning, after being on a bicarbonate drip all night, Boy Blue’s CO2 levels were still a little low (19, and they should have been at least at 22.) Until the acidosis was resolved there was still a concern that there was something not quite right in the kidneys.
Saturday was Day 3 of his episode, so he was considerably better than the previous two days. He only vomitted once (at noon, and whether he stopped after that because it was time, or because the nurses put him on Zofran, we’ll never know) and he was a little playful. He made games when I fed him and we rolled a ball around our room for a few minutes. Then we sat in the windowsill of our beautiful, large window, and watched whistfully at what seemed to be every other family in pediatrics playing in the play area just outside our window.
The day was long. The day was short. While not with us at the hospital Paul entertained Little Red and called me for updates I didn’t have. Dr. Grybauskas made orders that were overruled by the anonymous nephrologist (orders like getting off the drip to see if he could maintain his levels independently.) The few friends in the know dropped off so much food Paul had to put some of it in the freezer. Little Red spent the evening with his cousins while Paul visited us again, and left after he had barraged the resident (Dr. G being unavailable) with all the questions his mother had asked him all day. They had taken another blood sample in the evening and Dr. Miranda, our patient resident, was at that time able to confirm for us that the nephrologist was no longer concerned with renal problems and had we ever heard of Cyclic Vomiting Syndrome?
Boy Blue, much less afraid of his surroundings on Saturday night, slept well, only awaking when our nurse, Ron, checked his vitals, and quickly going back to sleep.
Sunday morning’s bloodwork had his CO2 levels up to 29, even after being off the sodium bicarbonate, with no major discrepancy between the blood and the urine. We upped the potassium in the drip for good measure, but were pretty optimistic about things.
Boy Blue was certainly feeling better. He ate breakfast. He didn’t take any morning naps. He walked around the room, and when we finally got the approval to unhook from the drip, we went outside.
I noticed immediately when we went out that there was fresh blood at his iv site and ran back inside to the nurses to ask “is this normal with a hep lock?” Well, since it was an unideal location for an iv in the first place, and had been in for 48 hours even though it was only intended for 1, they decided to take the whole thing out while we played for “half an hour or so.” The plan was that they would prepare a new site when we returned.
I took that timeframe very liberally. We had been out for over half an hour before Paul and Little Red came, and Little Red had been dying to play with all the cool toys so we went back out. By the time we went in for lunch the doctors had decided that Boy Blue no longer needed an iv, that they would monitor him for a couple more hours, and discharge us that afternoon.
To top it off, when food services came by with lunch, the sweet, ever-smiling lady who had been visiting us for days said (when she saw we had two extra family members), “I have an extra fruit tray today, would you like it?” Would we ever! The whole family ate until full. The boys played cars and balls in our spacious room. Finally the doctor came in, gave us a final chat about Cyclic Vomiting, and discharged us.
Both boys were asleep before we were out of Los Feliz, and transferred easily to the couch for long naps. I opted not to nap in fear it would mess me up at night, and instead caught up on many of the things I needed to do: email my parents and let them know we had been in the hospital, and email my pediatrician to arrange the return of her car seat, do laundry, and take a shower (heaven!)
Monday was the typical Day 5 of the cycle. If it weren’t for the tracks on his arm and the medical adhesive, you’d never know he’d been ill. He ran around the park, climbed the stairs, slid down the slide, ate, and talked as though nothing had happened.
This morning we went in for a follow-up with our pediatrician. As we played in the waiting area (we were early) a few of the nurses came out to marvel that Boy Blue had recovered so quickly. Our doctor was equally impressed. That’s Cyclic Vomiting Syndrome for you: when you’re in the cycle it’s debilitating, and when it’s over it’s forgotten. Boy Blue has even gained half a pound since Friday!
Children are so resilient. We would do well to be more like them.
This whole experience was a rather beautiful one for me. I was aware of the chaos, the confusion, the concern that swirled around us, but I never succumbed to the fear. I was completely present for it all, in the moment, doing. It was empowering. I knew we were okay. I knew that no matter whether we got answers or not, Boy Blue would be 100% normal on Monday (it being Day 5.) I could feel the supportive prayers of our family and friends, and I knew we would be just fine.
And he was. And he is. And so are we.
(That twitch I have is starting to fade…)