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...


Ryan said...

Very cute pictures. I must be so stressful and draining to not know the best treatment or diet for Bridgette in her fragile state. Tonight we'll pray for pee.

Jacqueline Miller said...

Oh, I'm so sorry to hear about the second bout of entero and your difficult day at the ER. I hope the irrigations and flagyl start working fast. Hang in there. We're thinking about you.

Tammy and Alvin said...

Wow, Kel! I can't think of a single thing to say that doesn't sound cliche. But, hopefully you know how much we love you and wish we could somehow make everything better. Get some rest and a few more bites of that scrumptious sounding cake and we'll pray that tomorrow is an improvement over today.

Smith Family said...

Wow! You guys have been through a lot! I'm so sorry and hope that tomorrow is a good day. Hopefully that new plan of getting the rehydration at your local hospital works in the future rather than having to go through the major process of getting admitted. Know that we're praying for you all.

I am so impressed with you and your class you're teaching! That's awesome that the panel went so well!

April said...

WOW... I'm so happy to hear about your class at BYU, and I am so sad to hear about Bridgette's complications. Being in the hospital is so draining- I'm glad they're trying to work out a better system to get her hydrated. You're in our prayers-- and really-- When Spring gets here and the kiddos are feeling better- let's get together!!! I'd love to meet you and your cutie pie.

kelgrandy said...

Oh, Kelly. I don't even know what to say. I cried and cried (and am still crying) as I read your post. How do you do it and still have such a wonderful sense of humor? How does Bridgette do it? Why is life so unfair for such an innocent little girl?

Chelsea said...

I like that kid--even more than I liked that cake. She's fun to play with. When things have settled down, let's get the kids together again.

Angela said...

She has got to be the cutiest little girl west of the Mississippi. (Not east because Isabella lives here) :-) Think of the cuteness when those two get together!
So you are super woman! I can't believe you are able to organize and teach a class and be a Mommy to Bri and a wife. Plus working around Bri's schedule. I know Jeff helps, but you are amazing. Don't forget that! I wish I could be with you while you are in the hospital, like last July. It was comforting to know someone else was with me. But know I was praying for you and Bridgette. And of course thankful I was at home just dealing with the normal stomach bug. Hugs and well wishes, praying all is well soon!

Aria said...

Kelly, I hope Bridgette starts to get better soon. The last few years I've been serving in the YW program. Sometimes I think the reason I'm in YW is more for ME than for the YW. The 2010 youth theme is Joshua 1:9 "Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest". I keep thinking about this scripture in relation to my life...although you may not feel like it, in my opinion, you are exemplary of this.