The (semi-) daily update

Since Adela is continuously improving, the doctors are looking at weaning her off the TPN in favor of her Elecare.  TPN comes in two parts with “some assembly required”.  One bag contains the lipids (fats) while the other bag contains the nutrient solution (everything other than fats).  The two are mixed right before infusion (otherwise they can clog the line).  While the TPN is a more direct form of nutrition (it bypasses the whole digestive system which is why it was needed to start with), it has some disadvantages.  Staying on TPN too long can cause liver problems and other side effects.  Medical lesson aside, tomorrow they will stop the lipids and reduce the concentration of the nutrient solution.  One unanswered question is in regards to the micro nutrients in the TPN and whether they can be given effectively as supplements.  Basically, are her intestines are healed enough to absorb them?

We don’t know exactly when the broviac catheter will come out.  As one of Adela’s doctors said, we’d really hate to remove it and then find out two weeks later that we need it.  We agree, however we were hoping not to need to go home with it.  However, in preparation, we’ve started learning how to take care of “brody” as Adela calls it.  It’s similar to taking care of “button” (her g-tube), just with a bit more attention to being sterile.

Adela’s GI doctor said we would start reducing her dose of steroids tomorrow.  Right now, she’s on the maximum dose, the theory being to hit the inflammation hard at the beginning to get it down as fast as possible.  Apparently it’s customary to then reduce the rate after about a week.  Her dose will be reduced by half starting tomorrow.  Hopefully the reduction won’t allow the inflammation to return and will also reduce her extreme mood swings and night sweats.  There are both subjective and objective ways to measure the health of her intestines.  Subjectively, we’ll be looking for pretty much the same symptoms that brought us here to start with: diarrhea, odd stools, potty pain, fever, and a few others.  Objectively, we can look at things like her albumin levels that will tell us how well she’s absorbing her nutrition.  We’ve not ruled out doing another scope procedure to see how well things have healed, however, like the first one, there’s always risk associated with it.  We’re not close to needing one yet, but it’s on the table as an option.

From a metabolic standpoint, Adela’s metabolic geneticist explained the results of her metabolic cart test.  Basically this test measured the oxygen Adela consumed versus the carbon dioxide she exhaled.  Then, using a super-secret complicated formula only known to doctors and those with access to the internet (something like (3.94 x VO2) + (1.1 x VCO2)), they calculate her resting energy expenditure.  Adela’s ended up being right about 830 Kcal/day, which is right about where it needs to be and just about what she is currently getting with her TPN and Elecare.  Also, the test measured her RQ or respiratory quotient (ratio of carbon dioxide produced to oxygen consumed).  The ratio indicates what the body is using for energy.  Different nutrients result in different RQ results.  Burning fats gives an RQ of 0.7, proteins 0.8, and carbohydrates at 1.  Since we usually have all these nutritional sources available to our body, a normal RQ should be a good balance of these (somewhere in the middle range at about ).8 to 0.9).  Adela’s value was 0.95, which tells the doctors that she likes pretzels.  Well, it really tells them that her body relies more heavily on carbohydrates for energy than fats and proteins.  That might explain why she has always liked starchy foods like pretzels, potatoes, and rice…

OK, enough for tonight.  We’ll post more in the next day or two as we know more.