From Julian's COTA journal.
I'm on the CalTrain headed south to San Jose as I write this, having spent a wonderful weekend with Stacy & Julian. They offer free Wi-Fi at the airport, so I'll see if I can post before takeoff this evening.
Julian is doing very well all round, although we did take him to the ER on Friday night. We had spent the day riding the train to San Francisco and back, and it was hot outside. On the way back from the train station, neither of us could be sure that Julian had any A/C on him, and he was pretty hot and sweaty by the time we returned to RMH. By 6 p.m., he had a temperature over 101 degrees F. He was fussy and irritable as well, so we feared there may be something wrong. Stacy called the docs, and they advised her to bring him in to the ER.
So off we went. Once there, the triage nurse did her thing, but when she took his temperature, she did it under the arm – and it was 98.6 deg F. Perfect. His head still felt hot though, so we took his temp again with our thermometer, the kind you put in the ear. Sure enough, still above 100. What's going on?
In the end, after conferring with Julian's nephrology docs, as well as the ER staff, we ended up getting discharged around 10 p.m., and the only thing we ever concluded was that it was likely that Julian had some form of heat exhaustion, and the hot head was the last of it working its way out of his system. By the time we returned home to RMH, he had stabilized, and slept soundly.
The rest of the weekend has been wonderful. The train ride to San Francisco was good fun, and yesterday and today we went back out to Pacifica and Half Moon Bay to watch the “wabes” (waves) and surfers. Even simply sitting in his stroller or walking along a calm beach sans wabes or surfers seems to be special to Julian – he always hates to leave. But we had fun all the same. It's so relaxing out next to the water.
We also found out this week that anyone with a RMH lanyard/keychain can get a free McDonald's Happy Meal on presentation of the lanyard. Subsequently, we discovered that Julian really likes Chicken McNuggets, as long as they're accompanied by BBQ sauce. Julian's assessment of the sauce was that it's sticky but good. Since then, we've referred to it as "sticky good sauce."
So now I'm on the train, headed back to SJC so I can fly back to Colorado. We're getting into a sort of routine, where Julian has come to expect that I'll always come back on Thursday (even though he's usually asleep by the time I show up). All this traveling is not for the faint of heart, but I can't imagine not seeing them for an extended period of time, especially during this turbulent season in our life.
Thanks to all of you for your prayer and support. It means more to us than you know.