Day 542

day 542

Benjamin was so tired from his day on the water last night that he fell asleep in our bed, watching TV with Banyan, before it was time to take his medicine. I woke him up with three paper cups and a glass of water. He cried just a little, unhappy about the waking–but he took his five pills like a champ, like he always does, without protest.

Michael came in to help me transfer Benji to his own bed. We noticed how warm Benji felt. We took his axillary temperature, and it was 99.6. The rule is to add a degree to the axillary temp for accuracy, which would bring it to 100.6, dangerously close to the threshold for a hospital trip.

Over a sleeping Benji, Michael and I had the discussion. We knew that a sunburn can elevate temperature, especially axillary temperature. Was it worth it to wake him up again to get an oral temp? And if the result were the same, would we pack up and drive to All Children’s? The answer was clearly no. We easily decided that the best thing for our boy was a good night’s sleep and a reevaluation this morning.

We all had a good night’s sleep. Benji’s morning coughing woke him first, and he crawled back into our bed. He complained quickly that he didn’t feel well at all. He was clutching his stomach and said he felt nauseous. I asked him if he wanted to take a bath–his preferred remedy for tummy pain–and he nodded emphatically. He took two baths in quick succession, with snuggles in our bed in between.

We had plans to return to Kathy’s today for another boat ride, this time with Gana and friends, but it was clear that Benji did not need to be out on the water again today. He needed to be in bed. Banyan also asked to stay home and nurse his sunburn. So Michael headed south alone to captain the ship, but not before we took another temperature to set his mind at ease. We took three oral temps, and they ranged from 98.9 to 99.6. These were numbers we felt comfortable with.

This was the fourth morning in a row that Benji has woken with stomach pain and nausea, and each day has been worse than the last. Benji asked for Kytril this morning (our anti-emetic) for the first time in many months. I gave it to him with his weekend antibiotic. He made a few other strange complaints throughout the morning, like spotty vision, and a burning feeling in his tummy, but each lasted just a moment. Still, I took notes. I used The Binder today for the first time in a long time. Benji stayed in bed for the rest of the morning.

I was hoping that the patterns of the last few days would hold true, and that the afternoon would bring improvement. And that’s what happened. By 2pm Benji felt like eating and had resumed bickering with his big brother. I don’t know what to attribute the nausea to, but the morning patterns make me want to blame his recent increase in 6MP; perhaps it has a nadir period also and it’s finally catching up with him. We have another adventure planned for next weekend up in Crystal River, and if Benji’s symptoms worsen, I may take him up to the clinic this week for some quick numerical reassurance before our trip. My sister recommended also requesting a Methotrexate level, which, with Benji’s history, is never a bad idea. So time will tell. According to the online moms’ group, nausea increases throughout maintenance as the meds increase, which makes sense.

I’m grateful that the Kytril worked so well this morning and that we still have this powerful tool in our arsenal. As Benji was falling alseep tonight he asked me how many hours apart the Kytril could be given. That boy really pays attention. He knows how these things work. I told him it was an eight hour interval, so he could take it again right before bedtime and hope to prevent nausea tomorrow, or wait and see how he felt in the morning. He said he’d wait and see. Such a wise and well-informed choice.

Michael sent me this picture of the stormy waters he was navigating this afternoon. I like this metaphor. We are strong and protected. Waves may come along and rock us a little, or sometimes a lot; but we never lose trust in our vessel.

One thought on “Day 542

  1. I agree with your sister to have a check on his methotrexate levels. When I had a reaction to this medicine one of the first reactions I had was spotty vision followed by nausea and profuse sweating. Maybe just a test to be safe and reassured.

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