Health knowledge made personal
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I'd have finished up our vacation posts already, but Bridgette's been sick now for a couple of weeks, so we've been busy with her and life.
 (Bridgette made 12 Valentines to give away last week. Here are some samples of works-in-progress. Quite the artiste, no? She especially liked putting glitter-glue on the eyeballs.)I'll get back to the end of our vacation at some point, but in the meantime, here's a quick update: 2 WEEKS AGO --We switch pharmacists for Bridgette's daily antibiotic, and the new pharmacist has to special order the less-foul tasting Flagyl powder for her compound. In the meantime they crush Flagyl pills and add 2 X's extra cherry flavoring to try to mask the rankness. --Apparently no amount of flavoring is sufficient, based on Bridgette's determination not to swallow. --Since we don't want her on antibiotics forever, we decide to try an experiment. Test her immune system to see if taking her off Flagyl will be successful. 1 1/2 WEEKS AGO --Bridgette's temperature gradually increases, appetite decreases, distention increases, urine output decreases, pain increases, stool output initially decreases then becomes explosive, and we start in with intermittent vomiting. --We put her back on Flagyl, forcing her to take it by pinning her down and syringing it down her throat, hoping to avoid gag-reflex. Doesn't always work. Quite miserable. --Ask the HD Family support network on Facebook for advice on administering unwanted meds to small children. Get lots of fine feedback. 1 WEEK AGO --Learn to bribe/reward Bridgette (call it what you will) with two "forbidden" chocolate chips when she takes her meds (based on feedback from another Total Colon HD mom in the United Kingdom whose child has to take 30 different meds daily.) Pharmacy gets special ordered Flagyl. Between the two, administering meds becomes easy again. --Bowel problem not solved. --Bridgette continues with intermittent apparent health and extreme pain. Sometimes plays and runs and jumps like a normal kid, tricking us into thinking she's better. Often followed by hours of screaming and tummy-holding, sometimes late at night. Stool alternates between all-day sticky smears and forceful mushy explosions. Occasional/unpredictable vomiting -- once every 1 to 3 days. --Send a stool sample to the hospital lab. 1/2 WEEK AGO --More of the same. Think she's better, then she's not. We're all tired. --No lab results yet -- long holiday weekend. TODAY (Tuesday) -- Lab results in. Negative on all normally tested bacterial-baddies, including C diff, Shigella, Campylobacter, and Salmonella. However, she's fecal occult blood positive, meaning her own blood is in her stool. --This is bad. --No obvious conclusions. --No way to know if this *is* or *is not* linked to taking her off Flagyl for a few days. Might be coincidence. Or not. As such, probably a pinch of irony. --Take abdominal X-rays at the hospital early morning. She's a champ. Runs around the waiting room talking to the old people and acting adorable. Has everyone . . . and I do mean *everyone* . . . smiling ear to ear. --She pretty much makes the world a brighter place. -- Removes her bead necklaces, hands me the penny she's been clutching, and lays very still and noble on the x-ray table. The techs can't believe how good and obedient she is. Frankly, neither can I. But she does have her moments. --Waiting at home for a professional readout. --She seems overly tired. Not eating. Doesn't want to drink much. Watching for serious dehydration, early signs already visible. --Also watching lots of her new favorite show . . . X-Men cartoons. :) That's my girl! She picked out this purple sweater dress to wear to the hospital this morning. Here she is watching X-Men on the couch, holding her tummy, rubbing her favorite blanket on her lips. I guess the dress is pulled up around her waste, so it looks like a shirt.   She just went down for a nap, but here are some more photos, taken only a few minutes ago: 1) Look! Prints! (Bridgette loves footprints, both looking for them and making them.)  2) Here she is trying so hard to be happy and playful.  3) But she really isn't feeling well today.  4) This is her classic I'm-Trying-Not-To-Vomit expression. She's gotten really good at keeping it down. Sad. She's only two.  5) All the girls' prints: Bridgette print, Mommy print, Piper print.  6) Back indoors for a painting session.     7) Which didn't last long before she dropped her head and said, "I done." (See below.) Poor kid. You can see her tummy distention a little in this shot. Unlike past complications, this one is lasting longer and is more erratic. It isn't classic enteritis. We don't have the total bowel shutdown we've seen in the past, but since we're not sure what's going on, we don't really know if this is better. Instead of having a completely distended tummy, what we're seeing is a lumpy abdomen. It looks really weird.  |
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