Corrigan’s “big” birthday gift was a small inflatable swimming pool and he has been chomping at the bit to swim in it since he received it at the end of May. It wasn’t as easy as inflating and filling it up though, as our yard is quite uneven, so his big brother spent the last few weeks, with just a pick ax and a shovel, digging out the hill on the one side of our house and leveling the perfect spot for his little brother’s pool. Four thousand gold stars for Connor!
We started filling it up last evening, and Corrigan was adamant that he personally test the water, despite the low temps and slight breeze, and was pretty angry when we made him get out because his entire body was blue-tinged. Hypothermia, who cares! So when I woke him this morning his first words were “I want my swimmin’ pool?” and he was in the water before Kelly and Michael were on tv.
I have to be very careful with Corrigan and swimming, though not in the ways that used to concern me when he was much smaller. I am sure that somewhere in the catacombs of this blog, I likely said that I would never ever EVER own a pool because Corrigan was so dangerous and untrustworthy around water, but things have changed, little boys mature and gain more understanding, and those concerns are not as great as they once were. Right now, my main concern is that I replenish any calories that he uses up while splashing and sputtering.
Last weekend, for Father’s Day, we headed up to the lake. We spent a little more than four hours there and aside from pulling Corrigan out of the water twice for a tube feeding and a few times to race out for a sip of juice and right back into the water, he never got out of the lake. He spent hours jumping and testing his fear by heading out too deep. He also had a raft that he would climb up on and then pratfall back into the water with, over and over and over, burning God knows how many calories. I thought that I had him covered, with soda and extra fluids run through the night, but by Tuesday he was pale and withdrawn and at Johns Hopkins we learned that he was borderline crisis, with an ammonia of 77 (100 or more lands him in the ER for rescue intervention) and a glucose level of 55. It seems that his body had, despite my best efforts, become catabolic from using up too many calories and not having them replenished quickly enough. That, coupled with a super nice 1 inch gain in linear growth since the last appointment, had asked just too much of his system and he was right on the edge of something ugly. I had never seen his blood sugar that low before but with a quick tube feeding and some juice and cookies, the color returned to his face and ended up going home, rather than being admitted.
So all of that is still in the back of my mind as we fill his little pool today and his excitement leads him to want to swim 20 out of 24 hours in the day. My goal, given to me by his team, was an extra 4-6 ounces of high calorie fluids PER HOUR of high activity, on top of the 42 ounces of formula and 24 ounces of other free liquids required each and every day. It is a wonder that poor kid’s eyeballs are not floating around the inside of his skull with all of the liquids he is forced to take into his body (whether by mouth or by tube) but we do what we have to do to allow him some summer fun but also keep him safe and healthy. His metabolic team firmly believes that Corrigan can safely participate in any sports or activities, and they have provided us with some guidelines, a plan of action specific to Corrigan’s particular needs for high activity days (including adding some calories and other things to his intake), and the encouragement we need to allow him to play, participate and thrive in all manner of activity.
Anyway, summer is officially on around here-so bring on the sunshine- we are pruning up some fingertips!