Friday, March 11, 2011

On Bridgette's Recovery

Here's my Tiny Pumpkin. I really like her.


If you're interested in the cool new hospital art, I wrote two entries previous to this one about art & music at Primary Children's Medical Center. Feel free to check them out.

And now...

We continue to see gradual improvement in Bridgette's health. At this point she is eating, drinking, and sleeping well. She is mostly happy.

1) Eating

Bridgette has eaten approximately 6 pounds (2.7 kilograms) of peanut butter since the day we came home. That's a total of 3 1/2 jars in 10 days.

That doesn't count everything else she has eaten -- like two packages of raspberries, gobs of guacamole, tater tots, soup, scrambled eggs every morning, Greek yogurt, and one outing to Mimi's where she ate a little of her dinner but mostly wanted salmon, mashed potatoes, and asparagus... because that's what was on *my* plate.

2) Drinking

Well, I admit. Since we've come home, I'm not tracking her fluid intake as well as I did in the hospital.

But based on how many Pedialyte bottles are missing in our previously fully-loaded food storage space, I would estimate she has drunk more than two cases of grape Pedialyte, or, about 18 quarts. She takes occasional stabs at water or orange juice but those barely count.

3) Sleeping

Except when she's in too much pain, she's sleeping really well. Her nights are a bit shorter than we've previously experienced, but her naps are a bit longer. If I had to pick, I'd take the longer naps anyway.

Now getting her to *go* to bed has become mighty tricky. Our pre-hospital bedtime routine worked like magic, but now she fights it. And when she fights, she poops a lot by accident, so then we have to start the whole process over again.

If you look at the photo above, you'll see various toys in her crib. We were never opposed to her having toys at bedtime, but now she seems to require them... and a "new" toy at that... as incentive. One benefit of toys in her crib is that we know exactly when she falls asleep and exactly when she wakes up... because she especially likes noisy toys. :)

Then again, all she needed to go to sleep today was a "fort." (Defined: a blanket above her bed). I didn't even have to read any books or sing any songs before nap time because she was so excited to get in her "fort." I hope it works again at bedtime.

4) On Being Mostly Happy

This is the trickiest of the categories because her mood still fluctuates a lot. Overall, I see progress towards more happiness/contentedness.

Bridgette seems to be happy when she is playing, not in fear, and not in pain.

Sounds normal, right?

Too bad she is in pain and fear a lot.

The unpleasant experiences/emotions still revolve around her intestines and her hospital stay.

For example, she can't stop pooping.

This may be in part because she's eating a lot, but let's face it, most of us can still control our bowel movements, whether we've just gorged on Thanksgiving dinner or not.

We're uncertain why this is happening. Here are the various factors for which we can't control.

Is she pooping this much because her intestines are in recovery mode from inflammation and simply haven't normalized? (We've seen that before.) Or, is she pooping so much because her diet has changed? (Um... 3 jars of peanut butter.) Or, is she pooping so much because her medication has changed? Or, is she pooping so much because of the anal sphincter Botox injections? Or, is she pooping so much because she's emotionally compromised? Or, is she pooping so much because she has a yeast overgrowth? Or, is it some *combination* of any of those variables?

Yech. You can see the trouble.

Because she's pooping all the time, her bum rash is horrid.

So... that would be the pain.

Her diapers are all maroon now, loose stool mixed with lots of blood. In fact, I went to change a diaper on Wednesday, and instead of seeing poop running down her legs, it was rivulets of blood pouring down to the floor.

With her raw skin being constantly slick with blood and her poop coming out in a mostly constant stream, it is next to impossible to dry her off for long enough to place a good paste. And even when we do... well, when we do the best we can... between the blood inside and the poop outside, the paste just slips off.

This is really frustrating because we have a paste that *works!* It's taken us years to develop and is a mix of several products. In those few hours now and again where she stays mostly poop free, we see a *lot* of improvement. But it doesn't last.

So then comes the fear. She's scared to poop because pooping hurts. I try to explain that if she can push out as much as possible, she won't poop as often, and that would help her to heal.

But just like trying to force a child to potty train, it doesn't really work. When you ask her if she needs to poop, she screams, "NOOOOOOO!" and tries to push you away. If you ask her if she needs her diaper changed, she immediately places her hands over her bum and says, "Nope."

And I have to be really careful what I say and how I say it, so she doesn't fight it harder and try to keep it *in* because that could cause bacterial build-up.

She's also scared of being changed because it hurts her so badly.

And we change diapers--
All.
Day.
Long.

Want an example?

I had to go to BYU today to pick up my students' midterms, and from the moment we stepped into the garage to actually getting her buckled into her car seat, I had to change Bridgette 3 times. I carry chucks with me, and I changed her right there on the floor of the garage, over and over and over.

That is why I find it difficult to accomplish as much as usual these days...

Bridgette also hates taking her medicine. Sometimes it works to reward her, but sometimes we still have to force her which feels very much like abuse. Both with diaper changes and medication, she gets very angry at me and tries to fight, and we have to pin her down and tell her not to hit us. She must see it as very unfair.

When medicine time and diaper changes are over, she doesn't stay angry at me, but sometimes she seems to be angry in general.

I'm planning to talk to a child psychologist to learn about signs that could indicate the development of any serious psychological problems associated with abuse.

If you think about it, she has undergone serious physical pain, often associated with being forced to participate in actions she doesn't want to undergo, for all of her life.

Fortunately we're finished for the time-being with irrigations. Those are the worst.

When she turns three, I'm thinking of enrolling her in martial arts.

Non-sequitor as that may seem, she needs a physical outlet for her emotions as well as an ability to control her frustrations. I hope it will be useful for her to be able to hit and kick as hard as she wants and then learn how to stop hitting and kicking within the context of self-control.

In other news...

We went to Bridgette's follow up with Dr. Harnsberger yesterday at her office in Murray. She mildly chastised me for being 5 minutes late. I said nothing.

Later, as she was watching Bridgette ooze and bleed on the table, I told her I was late because I had been changing diapers on the way to her office. I (again) had changed 3 in the garage before we could get in the car. I changed 2 in the parking lot, after we arrived but before we could get into the building. While we were in the exam room, I changed 4 diapers. I'm pretty sure Dr. Harnsberger got the picture.

So, I'm fairly convinced that at least *part* of the problem is yeast, and explained as much to Dr. Harnsberger. We have dealt with chronic yeast overgrowths since Bridgette's pull-thru, and her rash has all the markings of a bad yeast infection.

We've been using a topical antifungal cream -- the same one that has worked for us in the past -- but as mentioned, we can't get creams to stick long enough to make any difference.

If you've never seen a horrible yeasty diaper rash, be grateful. It's absolutely disgusting. It looks like her bloody skin is being eaten by a voracious fungus... which is what I think is happening.

The latest, as a result, is that we're adding a very strong oral anti-fungal medication to her daily regimen. It's a five day course, and hopefully it will work and then we'll be done with it. It comes in pill form, so I crush it up and add it to -- what else? Her peanut butter.

By the way, Dr. Harnsberger was *thrilled* by Bridgette's sudden love of peanut butter. In one week, Bridgette jumped from 0% weight on the growth charts to 50%.

There's one more list of things I should add to her element of fear, a list that makes Bridgette truly unhappy.

Doctors.
Nurses.
Anyone in a doctor's office.
And sometimes other people.

Otherwise... she's really happy!

Despite the grim picture I portrayed above, we're all really enjoying our time home, and we're living a mostly normal life. I've gone back to teaching my evening class at BYU (only missed two weeks). Jeff is working a lot on our business. We're both alternating time out of the house for errands or training (disaster response -- me) or meetings or whatever.

And to show you Bridgette is still a normal little girl, here are the things she's been enjoying doing most over the last week at home:

--I like to play music in the house, and she likes to say, "Dance, Mama!" And then we dance together. She's a demanding little creature. :)
--She likes to color. She can draw "A house!" and "A door!" and "A tree!" and "A saur!"
--She likes to imagine, especially with pretend food.
--She loves to play ball. She's an expert at the double-handed throw, and she's even improving at catching. It's really cute.
--She likes "chase."
--She loves to build forts.
--She likes to watch "Backyardigans."
--She's very observant and likes to look for specific things out of windows... horses, buses, etc.
--She enjoys listening to classical music, especially the more raucous composers. THAT'S my girl!
--She likes to build "slides" out of cardboard and then send marbles or her toy fairies for a ride.
--She still likes pushing (literal) buttons, my old TI-85 being a current favorite.
--She enjoys wandering outside when it's not too cold.

And these fun things... and changing diapers... is what we do! :)

4 comments:

jessica said...

Hi Kelly! I've been following your blog for a while now, as a fellow HD mom. My son is three and has SSHD, so we don't have it nearly as bad as you. But we have been potty training and I have noticed that while he can control his urine, he doesn't seem to be able to control his stool. It just leaks out constantly. We're working on that with diet/fiber, etc.

What I did want to mention, I think I read it on a forum many many months ago, there was a mom who was trying to deal with the constant rash, and she ended up getting one of those kiddie pools and putting it in the house. She put down blankets and covered those with chucks and let her child play in there (or watch movies or whatever) with no diaper on. It gave her a small time for there to be much less stool contact on the kid's bottom and she was able to get a good barrier of cream on there. Maybe something like that could work for you guys? Just a thought.

Good luck!

Lore said...

Love you guys! Hopefully the assurances of things improving by the time Bri is five are accurate. Hang in there!

Kel said...

@Jessica: That's a good idea.

I've heard a lot of HD moms just bathe their kids all the time. Or dunk them in the tub at every diaper change.

Too bad though, Bridgette doesn't love to bathe, so she fights us on that one. (One more battle! Do we choose it today or let it go?)

But! She really enjoys swimming. Even though your solution is essentially the same thing, she might view a kiddie pool in the living room as more fun than a bath. Especially if she gets to watch movies! :)

Smith Family said...

Oh, I'm exhausted thinking of all those diaper changes and really hand it to you. I hope that doctor felt bad for chastising you for being late once you explained how you had all those diaper changes in the garage and parking lot!