Since Adela is continuously improving, the doctors are looking at weaning her off the TPN in favor of her Elecare.\u00a0 TPN comes in two parts with “some assembly required”.\u00a0 One bag contains the lipids (fats) while the other bag contains the nutrient solution (everything other than fats).\u00a0 The two are mixed right before infusion (otherwise they can clog the line).\u00a0 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.\u00a0 Staying on TPN too long can cause liver problems and other side effects.\u00a0 Medical lesson aside, tomorrow they will stop the lipids and reduce the concentration of the nutrient solution.\u00a0 One unanswered question is in regards to the micro nutrients in the TPN and whether they can be given effectively as supplements.\u00a0 Basically, are her intestines are healed enough to absorb them?<\/p>\n
We don’t know exactly when the broviac catheter will come out.\u00a0 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.\u00a0 We agree, however we were hoping not to need to go home with it.\u00a0 However, in preparation, we’ve started learning how to take care of “brody” as Adela calls it.\u00a0 It’s similar to taking care of “button” (her g-tube), just with a bit more attention to being sterile.<\/p>\n
Adela’s GI doctor said we would start reducing her dose of steroids tomorrow.\u00a0 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.\u00a0 Apparently it’s customary to then reduce the rate after about a week.\u00a0 Her dose will be reduced by half starting tomorrow.\u00a0 Hopefully the reduction won’t allow the inflammation to return and will also reduce her extreme mood swings and night sweats.\u00a0 There are both subjective and objective ways to measure the health of her intestines.\u00a0 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.\u00a0 Objectively, we can look at things like her albumin levels that will tell us how well she’s absorbing her nutrition.\u00a0 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.\u00a0 We’re not close to needing one yet, but it’s on the table as an option.<\/p>\n
From a metabolic standpoint, Adela’s metabolic geneticist explained the results of her metabolic cart test.\u00a0 Basically this test measured the oxygen Adela consumed versus the carbon dioxide she exhaled.\u00a0 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.\u00a0 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.\u00a0 Also, the test measured her RQ or respiratory quotient (ratio of carbon dioxide produced to oxygen consumed).\u00a0 The ratio indicates what the body is using for energy.\u00a0 Different nutrients result in different RQ results.\u00a0 Burning fats gives an RQ of 0.7, proteins 0.8, and carbohydrates at 1.\u00a0 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).\u00a0 Adela’s value was 0.95, which tells the doctors that she likes pretzels.\u00a0 Well, it really tells them that her body relies more heavily on carbohydrates for energy than fats and proteins.\u00a0 That might explain why she has always liked starchy foods like pretzels, potatoes, and rice…<\/p>\n
OK, enough for tonight.\u00a0 We’ll post more in the next day or two as we know more.<\/p>\n","protected":false},"excerpt":{"rendered":"
Since Adela is continuously improving, the doctors are looking at weaning her off the TPN in favor of her Elecare.\u00a0 TPN comes in two parts with “some assembly required”.\u00a0 One bag contains the lipids (fats) while the other bag contains the nutrient solution (everything other than fats).\u00a0 The two are mixed right before infusion (otherwise […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false},"version":2}},"categories":[13],"tags":[],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/pviUd-82","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/498"}],"collection":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=498"}],"version-history":[{"count":1,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/498\/revisions"}],"predecessor-version":[{"id":499,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=\/wp\/v2\/posts\/498\/revisions\/499"}],"wp:attachment":[{"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=498"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=498"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/www.raisingladybug.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=498"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}