Monday, August 27, 2007

.27 52.5 80% Still going, but might be home

Dad stayed with John last night and he just called to let me know how rounds went this morning. Everyone is thrilled with how John is doing today and actually talking about maybe sending him home tomorrow, but still consulting with Omaha, just maybe not doing a hospital-to-hospital transfer, we'll know more about that later today or so when we hear back from Omaha.

First off, fun kids stuff. John was feeling so much better yesterday. He was ready to walk, run and play. Since the place is pretty quiet on Sunday's he and I walked the halls of the medical school. He was fascinated with the safety showers in the halls on the 7th floor. He likes to run to them and stand under them and tell me that they are a shower. He is also quite thrilled with the big ramp that goes from the 7th floor medical school to the new burn unit. He needs help stopping on the first ramp, of course it doesn't help that he is running as fast as he can down it, but I'm sure if we didn't grab the gait trainer to stop him he'd at least make a dent in the wall, but in my minds eye I see him sailing over the parking lot and giggling all the way. The second ramp has more space at the end and he can bring himself to a stop before he runs into anything. Always he turns and with a smile holds out his hands to go back up the ramp, it's a steep and kinda slick one so he can't quite make it on his own. We explored lots of halls yesterday and at one point on the 2nd floor found this huge atrium that connects the medical school to the library and has doors to the outside, it was too hot to go outside yesterday so we just wandered some more. When we got back to the floor I thought he'd be done, but the feeling better kid ran right into the play room and told me 'ride' and pointed to the wagon. Ah yes, since getting to ride in a wagon the last time we were at SLCH he is fascinated. So I told him to go and park in his room and I'd bring the wagon. We explored even more floors at at one point passing all the radiology people, some of whom we know from previous visits to that floor, the one guy rolled out into the hall for a high five before we passed, he got a really big smile from the wagon riding munchkin!

Later when dad came it was time to show him the cool ramp, safety showers and then since it was cooler the atrium and outside we went. John was amazed. This door opens onto the university campus near the volleyball sand pit thingy and some big green field with lots of markings and a track around it. We walked and watched the hordes of college kids playing volleyball and lacrosse, and a bunch of things I never understood but all of it was fascinating to John. He was really thrilled with the kids that zoomed past him on their bikes and the gaggles of girls that stopped to talk to him.

So what's those numbers. Well the first one is the smell of triumph. John's weight today is .27 Kilos higher than he was yesterday, that is the very first weight gain that seems to actually be John and not either fluid from lots of IV's or poo that's hanging out and won't leave. .27 Kilos is 9.5 ounces, of course weight gain, much like weight loss is going to have to be calculated on some kind of sliding average to get a real picture of what is going on, but today we are celebrating over these few ounces because they are his first in a very long time.

52.5, that's the rate that his formula needs to be pumped at over a 24 hour period to have him at 100 cal/kilo at a weight of 10 kilos. The medical math is fun and interesting, well at least to me. John weighs 9.04 kilos today, but since he desperately needs to be at least at 10, we are calculating everything nutritional based on that. So he needs 1000 calories a day, since we can't count on his intestinal tracts absorption rate, we are only counting his formula/g-tube intake and not the 300-400 calories a day that he is taking in cereal, potato chips and such.

80% is the strength that his formula can be mixed, funny thing about John his gut has not ever really handled full strength formula from the beginning, one of the Docs at St. Louis Children's explained the chemistry to me a long time ago, something to do with osmolality (this could so be spelled wrong) and such that if I remember right boiled down to his gut needed more water to digest things than normal. Add that to the kidneys that don't concentrate fluids normally and John is left with an extraordinarily high water need, which probably explains why despite all the fluids that they are giving him he still wants more water to drink.

The advice that we got a couple days ago seemed a little well strange to our ears. Not only to skip all simple sugar and lactose, okay these didn't sound so strange but we were amazed to know that even if they didn't throw him into immediate diarrhea that they would rob him of calories and make him not gain weight. The advice that sounded strange to our ears and to which I will admit we were more than just a little skeptical was the use of Miralax. Short gut kids as a rule never deal with constipation, never, prune belly kids constantly deal with constipation, always, John has the best or worse of both worlds he deals with it periodically. So after many hospitalizations that looked like serious obstruction issues and such, we finally all admitted that yep, the short gut kid has prune belly issues too. After many attempts at suppositories, which the child hates go figure, and other laxative disasters Mark and I switched to home remedies, apple juice, a bit of syrup, etc. Granted these kept the constipation away for the most part, but in the end it was a contributor to the lack of weight gain and the more we let him have of it, the more I'm sure that it was a contributor to the weight loss. It really sucks as a parent to have to admit that we were part of the problem, I suppose that is not just with special needs kids/parents though. Anyway so the advice was to pull John off all simple sugar, no juice, soda, hard candy, syrup, etc., but that things like Frosted Flakes and Cocoa Puffs in moderation were okayish and treat his periodic constipation with Miralax. Since having the pharmacy sub that for one of his other meds a long time ago we were pretty gun shy of this idea, but last night it was time that it needed to be tried and so we held our breath and had the docs try it, after all he still had an IV in his arm and if needed they could get him fluids quick. The docs were right again, and we are sold, the next trip to Wally will be for Miralax!

John not being able to have juice and such is not being easy though, we tried Diet Sierra Mist, it causes the same problems as sugar, we tried Diet Pepsi, he's not impressed, I gave him some Diet Coke yesterday and he did okay with it, of course it was watered down, but we'll see. We have turned him into a little juice addict and now we'll have to break that monkey off his back. We're hoping that he will go with some substitutes of real fruit where juice formally lived, and believe me dad and mom are going to have to find a way to enjoy that too. Somehow though I'm sure that it will be better for all of us in the end, and after all if John is gaining weight Mark and I would do anything!

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