Tuesday, February 22, 2011

We Don't Heart Complications

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:


--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.


--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 while she screams. 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.


--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.


--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.

In all these photos you can see the deep-set/sunken eyes that are an indication of dehydration. Another indicator we're experiencing is the wrinkly-looking skin she acquires near the top-insides of her legs and arms. You can pinch it, and it takes a long time to sink down and flatten. Hydrated skin bounces back into position immediately.

You might notice her lips are also very dry. When the capillaries in her eyes begin to burst and the wet diapers cease altogether, we make sure she gets an IV right away. Otherwise we try to ply her with as much Pedialyte as she will accept.

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's print, Mommy's print, Piper's 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.


Tammy and Alvin said...

Oh man! So sorry. X-men? Really? What happened to Magic School Bus? We'll pray sweet Bri.

Smith Family said...

Hugs coming your way! So sorry! You're all such troopers! I love her purple dress and the eyeballs on the valentines!

Tiffany W. said...

I'm so, so sad to hear this. May the Spirit bless and guide you with all of this! B will be in my prayers.

Anonymous said...

This sounds so much like what we have been going though w/ our also 2 yr old HD man. Last summer it was almost exact to this...the intermittent vomitin- that comes out of no where, distension, 'belly ouchy', etc.
We tried Botox today. Why is it that I am hearing this same story a lot lately, yet NONE of our dr's really seem to know what EXACTLY is causing it. It is maddening!
I feel your pain and send lots of HUGS!!!

www.josephweiss.com for our HD story

Jacqueline Miller said...

She looks so grown-up in that purple dress! I noticed the tummy distention right away - hoping she's doing better now and her belly feels nice and squishy!

Maelynn said...

Oh my... you can tell the hurt in her eyes, "just make me feel better" I'm sure is her wish, which is ours as well. Hang in there Jeff and Kelly, hopefully brighter days around the horizon!!

joe said...

I feel your pain. My little joey coop (2yr old HD boy) has been through quite a path himself. We just did botox for the first time last week. We are now dealing with some inner/anus rash (possible oozing), but we have had poop. I have not read all of your blog, but have you tried administering the flagyl via irrigation? Not sure if my wife has posted our site but our story is at joeycoop.com