Friday, February 26, 2010

What's News?

Although the majority of our week has been spent caring for a very sick baby who just returned from the hospital tonight, it's unfortunate I have not had time before now to mention a few other notable events.

For example, my brother Jon (who has lived with us the last 6 months) flew to South Korea on Monday. He arrived safely, and we wish him extreme-providence teaching English in Inch'on for the next year. Right before he left the States he sold his Japanese car, ate a last meal of Italian food, and played Chinese ping-pong at his goodbye party. Not that this is his first experience traveling, but we think he'll do fine in another country.

Although we're adjusting to his absence in the house, it was strange the first few days he was gone. The dogs missed him terribly, jumping at every noise in hopes he was home. They spent much of Monday and Tuesday running to the basement to see if he was there or standing wait at the front windows to greet him.

Note: This is not just any yummy looking Korean flag. It is made of chocolate cake, chocolate fudge ice-cream, and chocolate fudge piping. I would like another one, please.


For another example, as part of the course I am teaching at BYU (Health 422: Disaster Response & Emergency Preparedness), I organized a big panel discussion this week that included 10 key community members who play a huge part in disaster planning and first response here in Utah. It was a big deal for me, with tablecloths, microphones, film crew, audience programs, an open-invation to the whole University and everything.

We had battalion & deputy fire chiefs, a police chief, the Red Cross emergency director, emergency managers from hospitals, communications, city government, waste disposal, utilities, etc. It was cool. The night went almost without a hitch. But I think everyone who attended learned a lot, in one way or another.

And the only new pics we have (which I really wanted to post earlier too) are from last Saturday, a week ago, when Bridgette attempted to romp at the treehouse/dinosaur playground at the mall. This is her best effort climbing steps alone. It doesn't actually work, but it's a fine demonstration of her flexibility.


The photo below is titled:
"Quick. Find My Kid Before a Bigger Kid Lands on Her."



But the dinosaur's tail bones were just her size.



And now our biggest news, though it has happened before, is that Bridgette's intestines shut down again this week. Over last weekend she developed a cold. Just a cold. A simple cold. Who cares? It's a cold! Sigh... in Bridgette's case, apparently a cold can send her spiraling to the hospital.

Our best theory (and as of today some professional emergency room doctors agree with us) is that her easily upset bowels couldn't handle all the mucus she was swallowing. Whether this caused excessive bacterial overgrowth or whether the mucus had the same effect in lieu of bacterial overgrowth, the result was the same. Her remaining instestine is indeed distended and non-functioning. Despite the fact it may not be C-Diff related this time (yet to be determined), enterocolitis still seems to be the best title.

As I explained on Facebook, when she gets this way, it's not your run-of-the-mill generic yet unpleasant tummy bug. Her intestines can't push anything out and also can't absorb anything. They just fill with acid & bacteria & mucus and will keep filling until they literally explode.

I didn't purchase the new x-rays from today, but perhaps I can snag them someday and post them. To mommy's eyes, they're not a pretty picture. Imagine your child filling up like a balloon until she pops. Filling with... poop. Poop that's more toxic than normal poop which is so toxic it's what your body gets rid of every single day. That's what the X-rays look like. Fortunately, she's never perforated, but that's what we're fighting with the irrigations. In fact, enterocolitis is responsible for about 50% of HD mortality cases.

In addition, since Bridgette is already susceptible to dehydration with no large intestine, enterocolitis is especially dangerous for her. She can go from active to completely unresponsive in a couple of hours. Essentially, entero is super dangerous on at least two fronts.

We spent most of the week asking "Do we...?" or "Don't we...?"

Do we start her on Flagyl of our own accord? Do we increase rectal irrigations? Do we take her to the pediatrician for her cold, to check for secondary infection? Do we take her to the hospital for rehydration?

The answers were a slew of yes's. We tried, tried, tried to keep her out of the hospital. This may be hard to understand, but she simply does so much better at home.

Hospital visits are tortuous. Her body gets stabbed, pinched, needled, bled, stretched, undressed, and squished by stranger after stranger after stranger. They shine lights in her eyes, take away her food, confine her to tiny spaces, and put her in windowless rooms with no toys and lots of buttons she can't push. They don't let her sleep. She's not old enough to understand, and what's even worse? Sometimes they seperate her from mommy (ex: during X-rays). As hard as that is for mommy, I really do think it's infinitely more traumatic for baby.

You can see why I don't leave her side unless forced. I had a banana at 6 a.m. and nothing else to eat or drink until we arrived home at 7 p.m. I didn't use the restroom. I mostly stood on my feet (since we were in the E.R. the whole day, it was not a child safe bed). By the time we drove home from Salt Lake City, I think I was more dehydrated than Bridgette. We both felt worse than when we arrived. The benefit? We got some simple 5 minute tests done to rule out or confirm certain problems, and baby got her 15 minutes of I.V. fluids. But what a horrible 10 hour process to do it.

Now we're waiting and seeing and continuing treatment at home and HOPING she starts peeing on her own, so we don't have to do another 10 hour day tomorrow.

We're trying to arrange a system whereby we can call her surgeon, Dr. Black (who trusts us), and say, "Bridgette doesn't need to be admitted, but she needs fluid," and he will then call our pediatrician, Dr. Savage (who trusts us), and say, "Dr. Savage, order a bolus of normal saline solution for Bridgette; she's dehydrated," who will then call our local and much closer hospital to arrange a simple 15-30 minute procedure. Oh, what a dream.

One other good thing has come of this encounter. We have a lot of follow-up appointments.

HD kids don't necessarily have complications like Bridgette's, but because she has had entero twice in two months, we've been referred to a pediatric gastro-interologist. I have been told he works in a team and makes rounds with a social worker, a nutritionist, and a... another specialist I can't remember right now. All four work together to figure out what is happening with any given child.

Since we are constantly trying to figure out the potential interactions occuring where we can't track a thing until it's too late, this will hopefully be a great benefit. Between yeast, probiotics, antibiotics, mucus, flora, C Diff, E Coli, food sensitivities, and who knows what else, it's just been one big guessing game for us.

And with that, I must get ready for Bridgette's 10 p.m. round of Flagyl and irrigations. Then I get to sleep until 4 a.m. Wa-hoooey!

P.S. - This is our darling. She was already getting sick in this photo, but I guess we forgot to tell her...


Wednesday, February 17, 2010

Success: Categorized

First, a BIG congratulations to Jeff for successfully releasing his third iPhone/iPod game! It's a kids' application called Animal Learning and can be downloaded at our Digital Ruby site here.

What's also cool is that 80 people have already purchased it in the first 3 days on the market. That's almost the same number in 3 days as his first game, Deflect It, has sold in 3 months.

In celebration, Bridgette wore a new t-shirt.

One of Bridgette's favorite activities is playing this fishing game. For about 6 months, she has enjoyed placing each fish in its own hole as the entire pond spins around and around and around.

It's been fun to watch her dexterity advance over time. Initially, she simply placed the fish at her leisure. Then she learned to place all of them, not missing a hole. Then she learned to place them right-side up. Now, she is actually fishing them out with a pole while they move. Oh yeah, and their mouths open and close too. Crazy baby.


Now, on to the crux of the post. I have decided that my outtings with Bridgette can be categorized according to relative success.

Category 1: The Commercial


In this category, everything goes as planned. Baby and I are dressed to perfection, and we spend most of the date smiling and laughing with each other. There's no poop, no fatigue, and no mess. We spin in circles under a shady tree, yet our faces are strangely sunlit. The breeze is scented like buttermilk pancakes, and our hair blows in slow-motion. Bridgette giggles as I wipe her nose. Film us already. We're beautiful.


(Note: This has never happened. Commercials lie.)

Category 2: The Norm


You know what I'm talking about. Half the time you want people to stare and comment because your kid is doing the CUTEST thing EVER. EVER! The other half of the time? No staring or comments necessary. Oh! So you feel like commenting anyway? I see. Your kid never yells, punches, cries, or throws her food on the ground? I bet she never... ok. Bridgette you really need to stop that now.

Category 3: The "We Survived"


These are bad expeditions. The blood, sweat, and tears have no conversely cuddly, contented moments. By the time I'm pulling into the garage, my lips are pinched and my forehead wrinkled. Weary and annoyed, my tone reflects both threat and resignation. Snacks and naps, please, all around.

Category 4: The We-Forgot-Other-People-Exist


This category doesn't require much imagination. Simply picture sweatpants, mismatched socks, disheveled hair, and a willingness to ignore the fact that others do not look this way. Add to this a propensity to crawl around on the floor together, no matter what public venue we happen to visit.


I'm happy to report we've had several relatively successful outtings this week, all combination successes, Categories 2 & 4.

One was to the playground at the mall where Bridgette made friends with the little boys (or rather, the little boys seemed to like her) and got pushed over by a mean little girl. She practiced crawling up steps and going down the slide. She sat inside the dinosaur ribs and laughed as kids climbed over her and almost dropped on her head.

She was pretty cute until she started yelling angrily every time I was forced to move her: off the slide so she didn't end up with footware smashing her nose, out of the pond (enough said), away from the mean little girl, etc. However, when the tantrums were over, she very kindly washed her hands in the public bathroom and made a big, soapy mess. (Gotta love automatic soap dispensers.)

Another outting was to The Living Planet Aquarium on President's Day. She liked the trout (tried to poke their eyes through the glass) and the jellyfish, was scared of the giant ridable ceramic frog, and loved the tidepool touch tank. She never actually touched the rays, but she effectively scared them away by splashing too much.

She mostly liked the displays, but when ready to move on, never told me softly. The handy phrase, "Please move on, mom," came out as hysterical body wrenching and the word "ow! ow! ow!" repeated until everyone in earshot watched. But when we left to drive home, she pleasantly chatted and giggled in the backseat, flossing her teeth and eating my chapstick. Overall, completely The Norm.

Thursday, February 11, 2010

Good Days

Bridgette's intestinal quandry hasn't totally cleared up, but her range of motion is increasing, if not by leaps and bounds, then at least by crawls and stands.

We always put Bridgette to bed in only a diaper because she wakes up covered in poop every morning and every afternoon after her nap. This allows us the opportunity to pick several outfits a day. Here is a picture of Bridgette's attire as chosen completely by herself for the first time.

And here we are back at motor class. I can't remember why I chose this photo. I think because she's cute. That would be just like me. But since it's included, I'll point out the "oooh" you can practically hear. Only hear it like this, "ooo-OOO-ooo," as in The Sound of Discovery. That is one of her two favorite things to say now (the other being far less cute and sounding like "ow").

This is Bridgette sharing corn with one of her fellow students. She spent much of her time here carefully placing corn down in the crack between the inner and outer sturdy corn boxes. I don't think it will ever come out.

And we end with a section dubbed "fun with eyewear."

Bridgette has therapy 3 to 4 times a week now. Two visits at home plus two classes at Kids On The Move. She has joined a music class as well as the motor class. She had her first music class last week (her second tomorrow), and it was amusing. She spent most of her time bee-lining for the open door. The only thing that truly held her attention were the drums. And as soon as they broke out the drums (and these were big suckers... the real deal) I assure you Bridgette held everyone else's attention. I couldn't stop laughing. What a character.

Here are 5 of the best videos ever -- only because they show Bridgette in motion and that is so exciting for me. The first is of one of her favorite toys at motor class.
video

The second is of her crawling with her friend Travis. The video starts with her in a straight-leg position. It appears she may be trying to push herself into standing at random. Her physical therapist guesses Bridgette will start walking in 6 months.

In the video you can see a baby walker in the background. Bridgette has been given her own walker that we keep here at home. She has yet to agree with the walker as a whole, though she sometimes slithers under it on her belly.
video

The third video is a gem. For the first time ever, Bridgette pushed herself into standing (minutes before this video). So I caught the second ever solo-stand. It looks such a little thing, but ... well, you can hear my voice in the video. It was really exciting. You can see her occupational therapist, Mark, in the background.
video

And these last two are for Grandma Hoose (et al) - Bridgette opening, talking to, kissing, walking, hugging, and biting your Valentine gift. I didn't get it recorded, but she carried it around in her mouth while crawling. Like a puppy.
video

Finally, Bridgette getting mad at your Valentine card because she can't get it out of the envelope, followed by a swell recovery.
video