.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!

Still home...

...thankfully, but little boy isn't feeling very well at all. It seems to be bacterial overgrowth in his gut and we are changing a medicine today in hopes that it will help and our sweet little guy will again feel like playing, talking and having a good time. We took him for labs yesterday and his numbers are holding steady, not great but steady enough to stay home.

Because John isn't gaining weight we will be experimenting with several bacterial overgrowth options in the near future, for the moment though we have to get past the current issues. Bacterial Overgrowth can among other things cause lack of weight gain, weight loss and even if left unchecked can starve a person to death while they are eating all the time.

In the normal persons system the stomach is kept sterile by the acid present, the small intestine has no bacteria of it's own in it, the ileocecal valve keeps things flowing from the small intestine to the large and not backwards, and the large intestine is filled with bacteria, mostly beneficial. Short gut kids have anatomical issues that cause the normal bacterial routine to be difficult at best. Since John has no ileocecal valve between his small and large intestines the bacteria are free to flow from his colon into his small intestine and he most likely has bacteria all the way up to the pyloric valve, the valve between the stomach and small intestine. His gut also flows differently than normal because it is very distended and even with good peristalsis things don't flow efficiently. This allows the bad bacteria a place to grow and do bad things like break down food in ways that the body can't absorb, or just steal the nutrients from the food and also to choke out the beneficial bacteria that break down food in a way that the body can utilize.

John has been taking flagyl and neomyacin, two antibiotics, in a 7-10 day rotation for a long time. Interestingly enough these actually kill the good bacteria also, but they increase the oxygen level in the gut at the same time with also kills the bad bacteria indirectly. We have been told by John's docs that he may always have to have some antibiotic help to maintain a workable bacterial balance in his gut. There are some natural things to try and we will be working with those as time goes on.

Probiotics, introducing beneficial bacteria to the gut, is all the rage right now, and even though the data on it isn't ironclad there is evidence that while not a cure-all it will certainly be helpful. So we will be doing that in one form or another. Probiotics are found in yogurt that has live cultures and can also be found in a powdered form too. John was on the powdered form a long time ago with some good affect and had been on yogurt for a while but that habit fell to the wayside on vacation and he's lost the taste for it. One of the doctors who talked to us about this gave us some valuable information on yogurt that the extra price for Activa and such are just advertising gimmicks and that all live-culture yogurt contain the same bacteria, that's what makes it yogurt, as opposed to it being buttermilk, or cheese, both of which also are made with bacteria.

Prebiotics is pretty much the new kid on the block, that is giving the gut the food that the bacteria (probiotics) need to live on. The easiest of these to do is Metamucil which is a soluble fiber. Unlike all the commercials that we see about Metamucil helping with constipation, which give the impression that the fiber itself does something, you need insoluble fiber for that effect, the soluble fiber of Metamucil is one of the favorite foods of the good gut bacteria and can not only help them increase but can help them help the colon absorb another 500+ calories per day. This is another area without ironclad proof but then there is a certain degree of art in all medical science so ironclad proof is not assured even in the best things. One study that we read though stated that while probiotics will increase the beneficial gut bugs 'x' amount, no I don't remember the exact number, what I do remember is that in that study it was found that prebiotics will increase the beneficial gut bugs '10x' and that the combination is higher still. So we will be doing that too, as the current crisis situation settles down.

When we were at St. Louis Children's this time the GI fellow that was on duty was taking the time to visit with us about these gut issues, he is doing his research on gut bacteria, we're thrilled to know that he's doing that and to have the chance to talk to him too. It is so nice to have access to such learned people so that we can learn more about why John has problems and what we can do to help him. Here's hoping that John doesn't have to be hospitalized again anytime soon, we know that it is part of his life that we will always deal with, but still it's nice to be home.