Tuesday, December 18, 2012

A Hirschsprung Hooray!

(Lorax Christmas Tree, PCMC, Riverton)

Hello friends!

We started this blog as all things Bridgette. And initially all things Bridgette happened to be all things Hirschsprung Disease all the time.

In the last year, Bridgette's health has been so good comparatively that I've basically stopped writing or, when I do, picked completely random topics to write about.

But today I'm back to Hirschsprung news.

On Wednesday, 12/5/12, I took Bridgette back to Primary Children's Medical Center for a check-up with her pediatric gastroenterologist, Dr. Janet Harnsberger.

When Dr. H walked in the door, she looked at B and her first words were, "She's so big! And beautiful!"

Then she looked at me and her second words were, "You look younger."

How would you have responded?

I think I laughed, nodded, smirked, shook my head, snorted and said, "Thank you," all at the same time.

My Dad says, "Age and chronology are two different things. Some years you get older. Some years you get younger."

Too true. Amazing how much you can age or anti-age, dependent on your circumstances.

So the last time we'd seen this doc was in March of 2011 after almost two weeks of hospital hell.

Those weeks stretched out into more than a month before we saw the improvement we needed to remember that life does in fact exist outside of zero sleep, non-stop diarrhea, and rivulets of tears and blood.

So, is it a surprise that I look younger now? Not so much.

What WAS a surprise is how well Bridgette is doing!

We did a blood draw, and I think Bridgette literally didn't blink. She thought it was cool to see her own blood in test tubes.


Metabolic blood panel:
Blood salts, sugars, kidneys, liver, calcium and phosphorous = ALL NORMAL

Clotting (PT/INR):
Vitamin K = NORMAL

Vitamin D:
A fat-soluble vitamin, meaning results are indicators for other fat-soluble vitamins, like vitamins A & E = NORMAL

Vitamin B12:
A water-soluble vitamin, if normal once, should always be normal, and acts as an indicator for other water-soluble vitamins like all B vitamins & vitamin C = NORMAL

Helps synthesize and repair DNA, aiding rapid cell division and growth, and produce healthy red blood cells to prevent anemia. Sulfasalazine (Bridgette's daily medication) can inhibit folate = NORMAL

(Bridgette, post-blood-draw, and Dr. H)

As the exam continued, I heard Dr. Harnsberger giggling. She's a no-nonsense woman, so it was a little disconcerting.

*Here Are Dr. Harnsberger's Exam Notes*
[insertions = mine]

Beautiful, rosy, warm, busy, engaging
Skin hair nails all good
Eyes clear
Throat clear, no thrush
No lymphad, NI thyroid
Lungs clear
[means audible bowel noise, a good thing]
Palpable bowel loops
[meaning when she lifts her shirt, you can see clear outlines of her intestines, not a good thing, indicates distension]
No hernia
Bum good
DTR good."

(Later that day, celebrating at the "beach.")

*Here is Dr. H's Assessment*

Super everything after colectomy.
No trouble with low dose sulfasalazine.
See in a year."

Let's not forget her Height-for-age and Weight-for-age centiles:

From birth, B had always popped around between ~10-20% in weight, but when she was in the hospital the last time, she puked and had diarrhea for two weeks straight. She lost several *pounds* of weight she couldn't afford to lose. By the end of that visit, she looked skeletal.

*On 2/23/11 *

Weight 22.93 lbs
Centile = 1% 

Height: 35.98 in
Centile = 54%

But in the last year, once again, we've seen a lot of positive trends:

*On 12/5/12*

Weight: 36.16 lbs
Centile = 46%

Height: 39.88 in
Centile = 31%

As the exam continued, much of it entailing questions to me about Bridgette's development, eating habits, attitudes, abilities, etc., Dr. H. just kept saying, "Wonderful! Wonderful!"

I said, "I get the impression this is unusual."

She responded, "This never happens."

Shaking her head. "I've never seen a Hirschsprung child do this well. And do this well this early. Especially one with a total colectomy. I've never seen one of my similar patients begin to potty train before about 5 years old. And if you had asked me about Bridgette a year and a half ago, I would have guessed she would never potty train. To start holding her bowels a year ago? Unbelievable."

Now, I'm gonna go ahead and admit that not everything is perfect. Not to be a downer, but we keep it real here. This is a blog where you learn what's really happening.

For example, B has to go potty about 6 times a day. Not just go potty like you or I go potty. She has to empty everything out or we start seeing those bowel loops protruding inside her belly.

You know how you can see an emaciated person's ribs, clearly defined under their skin?

When Bridgette is distended, which happens nearly every day, you can see her intestines in the same way you can seen an emaciated person's ribs.

It's quite a sight.

And when her Ileal loops are visible, it means trouble. Pressure, lots of pressure, created through the natural process of accumulated gas, liquid poop, and acid. Enough pressure to blow her up like a balloon and explode. Unlike most people, she accumulates all three extremely fast. Not only is it the precursor to explosive vomit, but if she doesn't vomit, it's the precursor to perforated bowel and potential life-threatening septicemia.

The trouble lately is she's scared of the potty.

Like. Terrified.

We've had to bring a pint-sized plastic training potty into the bathroom at home, and she uses that. Which means we have to empty the receptacle and clean it and her up at least 6 times a day. And we're talking explosive diarrhea here with a lot of force behind it.

It's messy.

In addition, she's having some accidents lately. Explosive accidents. It's no fun for anyone. We're also not sure why it's happening, but we think it's related to her new fears, the result of which is that she doesn't always de-pressurize as often as she should.

Even though potty-training issues are not out of the ordinary for HD kids, we went over six months with a perfect record, so it feels a little like moving backward. Still, compared to last year, life's a breeze!

The potty fear came on suddenly, and she talks about the "Flushers" as though they're monsters in the toilet. From what I can tell, she's afraid of falling in / getting flushed down, and somehow the "Flushers" are a part of that. I hope that as time marches on, she'll naturally grow out of that worry.

It doesn't help that I once convinced her to use a giant public potty (that she honestly *could* have fallen into, it was so big compared to her).

It flushed underneath her.

Loud, horrendous, water spraying, terrifying experience that that was...

Public potties are right out.

And not just the auto-flush ones. Little. Big. Auto-flush, self-flush. Family-oriented. Big stall, little stall. No stall. They're ALL out. Right out.

I've been asking fellow-HD parents for advice through Hirschsprung support networks, but if anyone out there in cyber-happyland has advice, I'm taking all suggestions.

(Shh... telling Big Bird a secret.)

Nowhere were our potty woes more apparent than at the same hospital visit about which I've been writing.

She hadn't been potty all day (this was around 2PM), so we needed to take an interim-exam potty-break, especially considering her bowel loops were practically sticking out of her skin.

I tried my darndest to find a suitable potty.

After some explaining and referrals, a wonderful understanding nurse escorted us to another floor, through some limited access doors to a post-surgery area and introduced us to a tiny, manually-flushing child's toilet in a family restroom.

The nurse even got Bridgette a red-flavored slushy.

She left us, and I closed the door for privacy. (B is into that these days.)

Did I mention that NO public potties are suitable? I think I did. No matter how perfect and small and lovely the potty.

My first effort: reward-based incentives. (Slushy! Ice-cream! Bouncing on the bed!)

This used to work.

Then I progressed (progressed? Not really. What's the opposite.... anti-gressed? degressed? non-gressed? regressed --- ) through pleading, logic, example (me on a tiny potty? yep!), begging, silence, more rewards, more logical explanations, more pleading, removal of rewards (no ice-cream), and finally my (vain) effort to pick her up and physically sit her on the potty.

Bridgette did her best to bury herself in the corner. And screamed.

No. Did I say screamed?


Arched, rigid, panicked screaming. Like I've never heard before.

That's about the time the nurse came back.

"Hello? Everything okay?"

No. Nothing is okay.

I've been kneeling contorted on the floor of a hospital bathroom for 30 minutes, sweating with the effort of trying to get my kid to go potty. I'm a terrible parent. We're both miserable. I hate this. And I'm about to cry.

"Oh. We're fine! Just... trying... to go, you know. Potty."

"Are you sure? Because I'm concerned you're abusing her. Should I barge in and rescue your child from the atrocities you're committing on the other side of this door? I'm about to! Just thought you should know!"

She didn't really say that. But that's what she said without saying it.

Finally. I gave up.

And I ate her slushy.

(Not all of it. I shared.)

All of that to say that our lives are not normal. They're good. They're great! But they're not normal, and we still deal with stuff in an average day that is slightly harder than what might be average.

If such a thing exists.

For example, no matter where we have to go, what we need to accomplish, or what we WANT to do in any given day, we have to plan our schedules around her needs, so we can get her home to her special training potty.

Or we have to take her potty with us. We recently drove to/from AZ for my brother's wedding, and we carried her potty with us everywhere.

It was pretty awesome!

"Congratulations! Where should we put your gift? No, no, don't worry. Not the recently-used toilet. Your gift is under my left arm."

Despite all that, these days, mostly we're having fun.

Bridgette is delightful.

She fills my world with joy.

She's active, clever and spry. She's energetic and sweet, sun-up to sun-down.

She's also a handful. She's less sensitive than she used to be to touch, but she's still got some ... specific ... ways of processing tactual sensations, emotions, and wants/needs.

She's inquisitive and enjoys learning, a broad range of topics. Her top interest currently is the human body.

But mostly she likes to play -- play, play, play all day.

Her mobility is a thing to behold. Her speech is coming along nicely. Not only can I understand most of what she says now, but other people can too. The hardest thing for me is when she switches topics mid-sentence, from something resolute and obvious to something abstract or imaginary.

"Bridgette, what do you want to eat? Do you want cereal?"

"No, Mom, no cereal. I want .... a (semi-garbled) ... "

"You want what? An eggshell?"

"No, a cashell. A cashell! " Grump, grump. Stamp foot.

"I know you're frustrated. I'm trying to understand. Can you point to it in the fridge?"

Stomping in the opposite direction and pointing out the window.

"A cashell! And a boat!"

Imagine me staring out the window, open-mouthed. For a long time. Then turning and doing the same to her. Big, codfish mouth.

That's my thinking face.

"Oh! You mean, you see a castle and a boat? in the clouds?"

"Yeah! In the sky, Mom! It's a nice day."

"Yes. It is. Now, what do you want to eat?"

In my mind, I give myself blue ribbons all the time. It's my version of, "I should get a prize for that." You should see my collection! I have a room that's full of ribbons and trophies. A room in my head.

But the ultimate prize goes to Bridgette. You know, for being her.

I don't know why she has done so well. Some of it is parenting and love. Some of it comes from the influence of her family, cousins, teachers and friends. Some may come from all of your faithful prayers, though I know a lot of prayerful parents far more faithful than me whose children are not doing as well. Still, we are grateful for all the love and prayers that have been offered up on her behalf, and I won't dismiss them as a blessing to us all.

Most of it though? I think it comes from her. She's a fighter. Strong-willed. Amazing.


Lore said...

Just as there is a difference between age and chronology, progress doesn't actually happen in regular, linear fashion. I am so pleased with all of the accomplishments, despite the set-backs from time to time. It's the old "rear-view mirror" analogy. When time is taken to compare the "where you are" to the "where you were," progress becomes abundantly evident. Congratulations!!

Tammy and Alvin said...

I love both of your posts today. So glad you found the time to write them!

Kel said...

@ Tammy & Alvin: that's what happens when it snows and I refuse to go outside. :)

Paul said...

LOVED the two blog posts today Kelly! I'm so happy Bridgette is doing awesome. I'm glad I could give her a hug today. :)