He never had another fever, seemed to feel great and Jeff and I decided he was OK for school a day later. After I had dropped him off, I got a phone call from an oncologist telling me that Nico’s blood culture had grown something! His line was infected. I needed to bring him back to the hospital for IV antibiotics. The best-case scenario being 48 hours of repeated blood cultures and IV antibiotics in the hospital and then discharge home with oral antibiotics. Worst case scenario being that they have to remove and replace his central line (which means surgery).
All of us have transient moments throughout each day when our bloodstreams contain bacteria. Even brushing your teeth causes bacteria to enter your blood. Normally, our white blood cells kill it, and it is no big thing. But for someone with a central line (port), the catheter provides a little haven for bugs. The inside of the catheter basically gets a slimy coating that can collect grossness. Nico likely had a moment of transient bacteria in his blood, and his white blood cells fought it off. But white blood cells cannot migrate into synthetic tubing, and some of these bacteria took refuge in Nico’s port.
I was distressed by the time I picked Nico up from school. I apparently missed the first three calls from the hospital to bring him back. The in-patient oncologist had not seen Nico, and for all he knew, he could have been very, very sick. Instead he was running around at school having a gay ol’ time. Nico received his monthly batch of chemo earlier this month on the 10th. That visit included a lumbar puncture, and it was fairly unpleasant. The combination of that trip, then another clinic visit two weeks later, and now an in-patient hospital stay put me in a temporary funk. There are times when I am so resentful of how cancer has taken over our lives. I had a moment, but it passed. Strangely enough, it passed when we got to the ER. The oncologist we saw the day before in clinic met us in registration. We talked about all the possible scenarios. This doctor did impersonations of Kermit the Frog for Nico, and he was somehow very reassuring to me. Then we were taken back to the ER exam room, and the same resident that we have had every time we have been to the ER showed up. She said she saw our name on the board and said she wanted to take us again. It was a big load off to have the same doctor. It was amazing to me how much less anxiety I felt by staff that know us and go out of their way to see us. I think they are really invested in our care and outcome.
There are times when our hospital seems too big, and things are not as efficient. But I have to say that the vast majority of our providers are top-notch. So Nico’s port ended up being infected with haemophilus influenzae. Luckily there are a host of antibiotics that can treat it successfully. But because it is in his port, doctors (infectious disease physicians were consulted) recommended that antibiotics be administered directly into the port, and this means that the needle and tubing have to stay in for a while. We were allowed to go home today, but we will have to get IV antibiotics at home. (As an aside, when we got home Nico went to his room to change clothes. When he reappeared he said very seriously, “I hate to tell you this. But they forgot to take the poke and tube on my porty.”)
The unexpected wrench was that while we were there, Nico’s neutrophil count dropped suddenly. If you remember, the hospital has a policy about pediatric oncology patients admitted to the hospital with a fever. Basically, if his neutrophil count fell under 500, we would not be allowed to go home until daily labs demonstrated that Nico’s counts were no longer falling and in a recovery phase. This can take forever. Nico’s neutrophil count was barely over 500 today. So we had to make a break. If he gets another fever while home, we will end up in-patient again. Hoping for an uneventful week.
One last thing that helped with the funk was Nico’s attitude in the hospital. He remembers so much. One nurse entered our room that he had met once over three months ago, and she was in a mask both times. He immediately exclaimed, “You brought me a robot before!” And it was the same nurse. He remembered similar things about everyone. This time we were not in isolation and he was able to roam around the unit. We were across from the nurses’ station, and he spent his time hiding from his primary nurse under her desk. The other nurses started in on the game and would call his primary nurse and tell her she was needed so that he could surprise her. When we left, he kissed his nurse’s hand and said, “I like her face.” I do not know where he gets this stuff. But he makes the best of it. I started referring to the whole thing as our staycation.
I am grateful for a child that finds joy in unorthodox ways. I am grateful for healthcare providers invested in his future. I am grateful to be home.
P.S. The picture is from our hospital room.