Monday, February 28, 2011

On the Benefits of Being Blind

Last night I headed to "bed" around 11PM.

I was up again at 12:30AM, 2:15AM, 4:10 to 7:15AM (that was a long one), and finally up for the day at 7:45AM. Each "up" lasted about 20 minutes, unless it was longer.

In those hours, I had plenty of opportunity to ruminate on the benefits of being blind.


Now for anyone reading this blog either by the magic of technology or by the boon of friendship who is 100% blind, I admit... with corrective lenses, my vision is 20/20. However, when I take out my contacts at night to (hypothetically) let my eyes rest, my uncorrected vision is more like 20/4000. That's not an exaggeration. If anything, it's an underestimation. I looked it up on a Snellen chart.

Here are the advantages of very poor eyesight:

1st
When you jump out of bed at the sound of your name ("Mom!") your first predilection is to check the clock to see what time it is. This would make you grumpy because you would realize how little you had slept.

But! When you're blind, you can't see the clock! So, you go about cheerfully pouring juice and cleaning and creaming small bottoms, weighing diapers and changing chucks.

Finally, the time comes to record diaper weight and the time, at which point you turn on your cell phone and hold it 2 inches from your face. And voila! By the time you realize you should be grumpy, it's time to lay down again.

2nd
When you regularly swathe a baby's bum in Night-time Desitin it doesn't take long to realize that 40% zinc oxide smells a lot like fish. Not yummy lemon-pepper thyme roasted orange roughy but freshly-caught raw and wriggling lake trout. Or perhaps a dead and rotting fish of any variety.

Of course, this means you're getting that smell all over your hands, Desitin being chemically designed not to come off of your skin. With a lot of scrubbing, you would realize that most of the smell can be muted except for the Desitin still stuck under your fingernails. You would also realize those offending nails would *have* to be removed, post-haste, if you ever wanted to fall asleep again.

Here's the benefit of being blind. When you try to catch all those fingernails in a tissue on your bed, you have NO idea if you did it!

What!? You think that's *not* a benefit?

Let me explain.

First, you don't have to take any time to hunt for them. Second, just like any exam, it's way easier to pass your princess test if you've practiced a little.

"Mattress #1, go!"

"Pea!"

"Right! Mattress #2, go!"

"Fingernail. Pinky... no. Ring finger!"

"Correct! Mattress #3..."

3rd
You know, as prepared as you think you are, the Bridgette-comfort items lined up at the bottom of the bed will not be sufficient. There's always *something* you have to search and rescue: a flashlight so you can read the scale without blaring the light, a specific snack for her, a specific snack for yourself, *more* diapers, etc.

And when you're blind *and* in the dark, the hunt is awesome. Placing your nose inches from each piled surface, in the manner of the coon dog, you... no, you don't sniff... you squint.

What you see is so much the art gallery! For free! In shades of gray, you see objects pass in and out of view, Bas Relief mixtures of Picasso and Pollack and Salvador Dali. It takes a long while to interpret what is what.

Some people churn their creativity with the use of hallucinogens, but you don't need drugs when you're blind because *everything* looks a little wonky. It's exhilarating. Really gets the imagination going.

4th
Well, I don't need to tell you about all the things you're simply happy *not* to see. The mess of powder you spilled that matches the bed sheets perfectly. The diaper slop that somehow all looks... well... dark! There's no need to compare it to smashed barley soup or slightly beaten egg yolks or piles of green stretchy boogers or ... well, you know. It's just not necessary.

5th
When random strangers come in and wake you during your precious minutes of rest, you don't know who to kill later! That saves you from an eternity of damnation.

Seriously, it's great being blind.

6th
Once you pop your contacts out, it doesn't matter how much you want to read the next chapter of your fabulous book or how tempted you are to look at one more person's Facebook profile... you can't see them! This tricks you into thinking you can stretch out and sleep. Perfect! All the more time to think of blog entries when you lie there awake.

7th
When you are forced to listen to Winnie the Pooh's Search for Christopher Robin twice before 6AM, you don't actually have to watch it. In fact, even if you try, it just looks a bit like fireworks in the distance.

And fireworks are festive.

8th
When you put your contacts back in at the time of day people arbitrarily refer to as "morning," you almost feel like you've slept because the world is suddenly sharper and more colorful. The blind night looked like such a different place... it's as if you had been *dreaming* all night long. It's a neat psychological trick.

Well, those were all the blessings of blindness I could come up with in one night.

Actually, speaking of dreams, I had a lot of dreams about Bridgette. What a surprise!

And thanks to waking up so often, I remember most of them. In the last one (I dreamed it in the 30 minutes from 7:15 to 7:45), I had opened a daycare and all the kids were running amok bleeding out of their eyes or with broken arms or puking from tummy aches, etc. I had to pin them down and fix them before their parents came to pick them up.

Hmm...

Don't worry, I'm not opening a daycare. Ever.

AND LAST OF ALL
Here's this morning's update on Bridgette... which has nothing to do with being blind. If my contacts weren't in, I couldn't have typed this.

No one knows anything.

That's not me being mean; it's me being honest.

Overnight (11PM to 8AM), she drank 2 liters of Pedialyte.

Oh, I'm sorry. Did I write that in small letters?

Let me try again.

Overnight, she drank 2 LITERS of Pedialyte!

There. That's better.

For the first time I felt like her diapers were as much urine as they were diarrhea, though, as formerlyheretoforepreviously mentioned, I couldn't really see what I was changing.

Her diapers were certainly full. The fullest was over 5oo grams and had spilled out all over her chucks, through her chucks, and through all the sheets.

This morning she was so puffy from rehydration that I chose to take her off her IV fluids. Before I'll feel comfortable going home, I need to know we can keep her hydrated. The best place to test that is here at the hospital with her IV tubes still hanging wrapped from her arm.

Her eyes went from sunken and black 5 days ago to puffy this morning. She looks like the Botox injections were put in her eyes.

In addition, Bridgette is *acting* like she feels better. She's been out of bed wandering the room, drawing on the walls, dancing to the music on Disney Junior. And that's considering she didn't sleep well last night.

After spoon feeding a tub of applesauce into her mouth around 4:30AM, I decided to order a big breakfast for her as soon as room service opened.

Bridgette has eaten four small containers of peanut butter. First she wanted it on toast. Once she finished the toast, she dug in with a spoon. I just looked up and she's ditched the spoon and is scooping it out with her fingers.

She's also eaten scrambled eggs "dipped" in sliced strawberries (don't ask... she does what she wants), and some ketchup. She's polished off another 2/3 liter of Pedialyte.

So, that's all good. But...

Yeah, knew *that* was coming. Her girth is even *bigger* this morning! And she's still pretty much sloughing nothing but water and green mucous from her intestines, although admittedly, the slough is thicker today.

Warning! Science! (Mucous in our intestines is normal for all of us. If you want to know why you can poop, it's because your intestines naturally produce mucous which allows your food to pass easily first through digestion and eventually into the toilet. We call it "body lube." Bridgette is obviously over-producing mucous which is then being sloughed off in droves. We don't know why.)

I talked to Carolee from surgery. She's one of my favorites.

She said, "I'm gonna be honest with you. We're not convinced it's enteritis. We don't think she needs surgery. And none of us know what's going on. She needs to be here, but she may be shuffled off the surgery team's visits."

Our options now are to involve more people to create a care plan that is specific to Bridgette instead of to cases that are similar to hers. She doesn't fit any common profiles.

Now she's running around the room stuffing her face with Honey Nut Cheerios and asking to play outside.

Whereas I feel exhausted. I assume I look exhausted too. Perhaps I'll take out my contacts before checking the mirror...

Can't go wrong being blind.

Sunday, February 27, 2011

Satur... no... Sunday Update

Hello all Bridgette lovers:

This will be quick because I had a long night, and frankly, I'm hungry and want to get to breakfast before it closes.

No update yesterday because not much changed. For every 120 CC irrigation, got 300 CC's out. Weird. She seemed mostly happy. Played in the playroom twice, once with her cousin Ellie who came to visit. :) They painted some pictures that are now adorning our hospital walls. Cute.

Yesterday afternoon started having more frequent and more full diapers... I didn't know that was possible.

She goes back and forth hating the doctors more or less based on how much they touch her, poke her, bully her, take her stuff, etc.

Today... well, last night... she slept alright, I guess, but she burned through diapers like none other. Wet through diapers, rather. And the sneaky bit? Almost all the wet comes from the bum through intestinal transit.

She's been asking for Pedialyte like crazy. We've been through 3 liters since yesterday, but I'm pretty sure those 3 liters have all gone straight through her.

So the alarms were evident this morning (around 5:45AM -- when, due to being woken for vitals followed shortly thereafter by a round from the surgeons, we were up for the day), I went to change her diaper and noticed her girth was significantly bigger, despite the outpouring of outpouring all night. We measured her, and she grew from 39 cm yesterday morning to 46 cm this morning. That's quite a jump.

She is back to having a low-grade fever. And then when I did this morning's rectal irrigation, I put 60 CCs in and got 3 CCs back out. So... that means... what? I don't know. Why would she pour but then retain what I put in her? Why did the method that helps relieve pressure just add to her growing girth?

I've been frustrated throughout this experience, but today is beyond words.

No that's not true. I have the *perfect* word.

GACK!!!

The surgery team is consulting with GI in a big Wow-Bridgette's-Beyond-Explanation pow-wow. I have yet to hear from them.

In the meantime, I collected another stool sample this morning and will be requesting a third set of cultures. Yesterday I was informed that the new medication she is on is actually an anti-inflammatory, not an anti-biotic... so they basically switched her cold turkey from a year's worth of daily Flagyl to what is supposed to be a consistent regimen of Sulfasalazine. Currently I'm concerned about the repercussions of that choice.

What else? Let's see...

Oddly enough, Bridgette has wanted to eat again this morning. She's munched on a few Cheerios and had 4.5 Club crackers so far. And as formerlyhithertoforepreviously mentioned, she's been gunning on Pedialyte.

She's watching "Babe" for the second time right now, her third movie of the day. And she also invited me into her bed to build with her MegaBloks. What a great morning to bond with my daughter at 6AM over giant Japanese anime faux-Legos.

OK -- Well, I missed breakfast, but only because Dr. Black came by, so that was worth it.

Noting her increased hydration (true, her eyes don't really look sunken or bloodshot this morning, though she still has some unwanted dehydration wrinkles) and her desire to drink gallons and snack, he is really hopeful that her increased appetite bodes well and that the increased girth is from slowed digestion and that the new distention will rectify with a blow-out of thicker stool.

So he has ordered a diet that allows her to eat anything she wants.

Translation: Anything I think is reasonable.

The issue is that if she *doesn't* eat something normal and keep it down and digest it, we're looking at inserting a PICC line tomorrow and putting her on TPN. Yeah... we pretty much all want to avoid that if possible. But then, she hasn't had any proper nutrition in about 3 weeks.

I've ordered her some scrambled eggs, dry toast, banana and strawberries. She's wolfing down her eggs. We hope that's a good sign.

So cross your fingers people, all over the world. We *do* believe in eating! We *do* believe in eating! We *do* believe in eating, digesting, nutrifying, and pooping something thick and absorbed-looking.

Ah...

Well, I'm off. Thanks for reading.

Friday, February 25, 2011

Quick Update, Post-Op

Bridgette is out of operation. It was quick... but not quick enough!

The hardest part of this operation was saying goodbye. When she was 7 days, we didn't get to say goodbye before surgery because Jeff and I were quarantined. When she was 1 year old, she was timid before surgery but didn't really know to be upset. Although the procedure was less invasive/scary for me this time around, *she* was a lot more vocal and very sad. Goes against my nature to walk the other way when she's calling and reaching for me.

By the time they called me into post-op, she had already woken up. I came around the corner and the nurse sitting with her said, "Oh! There's mom!" She sounded relieved.

From that point until now, Bridgette's been spittin' mad. Sometimes literally.

She's screaming at everyone, yanking her arms and legs and wrenching her head away at every necessary follow-up: temp, flushes, PulseOx, blood pressure, meds (new meds! bigger fight!), etc.

At least we know her vitals are good.

In fact, she was just asking me for food. She hasn't done that in days. And what did she want?

"Mom? Mom? . . . Meat."

"I'm sorry sweetie... you can't have meat right now."

"Umm... cheese!"

Yep. Meat and cheese. :)

She had to settle for a popsicle.

Now that's partly because, despite all the irrigations, when Dr. Miller administered the anesthetic and Dr. Black began his work, apparently she gushed and gushed... fluid, gas... it all came out. Well, we hope so.

So maybe that was partly responsible for her sudden appetite.

I was able to talk to Dr. Black before the op for more details and info. Apparently she was switched to a new antibiotic (glad he told me, no one else did) and the combo of that and the Botox has enough accumulated anecdotal evidence that he hopes we'll see some success. He specifically said "anecdotal evidence," so that's "proof" enough that this is a fairly new procedure.

The good thing about these injections is that there is some evidence... no, "anecdotal evidence"... that it could be helpful. Or not. But at least it won't be damaging, so it's worth a try.

Now from other HD moms whose children have had Botox injections, they say it lasts from 6 weeks to 6 months, dependent on ... who knows what? Dr. Black is hopeful this will be a one-time procedure which really surprised me. That may be dependent on whether she can be potty-trained before she would need a new injection. Given her extraordinary will-power, I know she will be potty-trained before she needs another injection... *if* she wants to be. If not, we may be back.

Speaking of being strong-willed, the anesthesiologist asked me if I wanted him to switch her IV to a new vein while he had her sedated. I said, "Absolutely!" Well, I guess he waited until she was in the process of waking up before he started.

Bad idea.

He was trying to find another vein in her right hand (to leave her left hand free since she's left-handed), but he told me she fought him so hard he had to pin her down and pick the easiest vein he could find. "Sorry," he said, nodding toward her freshly IV'd left hand, followed by, "She's *really* strong."

I agree. She is super strong. And except when she's fighting me, I'm glad for that. :)

Now we wait to see if the new antibiotic and the new procedure help her to feel any better.

Oh, also, I asked Dr. Black to order a another sample to culture for norovirus. I didn't think to ask until he'd come into the op-waiting area to give me an update, so we didn't get to use any of the super-jet. But he agreed it would be a good idea, so I'll collect a sample tonight during her irrigation.

I took some photos/videos, but I don't have a way to download them at the hospital, so they'll have to wait.

Right now she is watching "Invasion of the Tinysauruses" (for the third time today, second time since surgery). Post-op she's had two cups of juice, one popsicle, and is now munching on some Cheerios. I hope it stays down and actually gets digested/absorbed, so we can start considering going home sometime next week.

Quick Update, Pre-Procedure

While I was home last night a number of things occurred.

First, Bridgette vomited more... three times more, around 4AM.

Second, Jeff and Dr. Black and Dr. Harnsberger (Bridgette's new GI) agreed to do a procedure today that is somewhat new to the Hirschsprung world... Botox injections in her anal sphincter. (Why is sphincter spelled with an "i?" It seems like a "y" kind of word... sphyncter. Yes, that's better.)

Third, her procedure was scheduled for 12:15, but due to some emergency cases that have arrived at the hospital, she has been pushed back twice. Current predictions put her in the op-room around 2:30PM.

Fourth, because the procedure requires full-sedation, she is not allowed to eat or drink until she wakes up. She hasn't been whining about either, but since she hasn't had a good meal in two weeks and was dehydrated before this all began... well, she doesn't look any better today. That's for sure.

Fifth, I have decided I will not be leaving the hospital again until Bridgette comes home, no matter what.

If you're wondering why Botox injections? Well, those anti-wrinkle people came up with a drug that had HD professionals thinking. I guess with all the inherent ganglion troubles, sometimes there is a partial closure, or tightening, at the top of the anal sphincter (the sphincter having several natural internal ridges, one or more of which may be affected) that the Botox helps to relax. When the sphincter doesn't open properly at one or more ridge site, it blocks the natural flow of things and can keep bacteria trapped in the intestines which then allows for bacterial build-up.

If the injections are useful, it means we will have to do further injections every 3 to 9 months for X number of years.

Now personally, I'm not convinced Botox is the solution to our trouble, nor am I convinced this procedure will have any direct bearing on her current condition. Watery diarrhea with no obvious bacterial/viral causes may or may not have been caused by a tight sphyncter. Sorry, sphincter. When she is "well" -- which was almost all of last year once we started her on Flagyl, April to now with one enteritis scare in November which we think was viral in nature -- she is really well. She poops on her own twice daily, at predictable times of day/night. She was even recognizing her own body's urges and had started potty-training at one point, so her control seemed to me to be pretty good. Because her poop is not very thick, given the whole no-colon thing, constipation or bowel back-up hasn't seemed to be a problem... um... ever. Well, except for the first few days of her life.

Now that said, the GI told Jeff that she has had multiple TCHD kids who seem to deal with this same problem, intermittent but serious GI track problems *and* that she has had good success with the Botox solution. Although the idea is still somewhat new, almost experimental, the injections are used worldwide. I'm a part of a large Hirschsprung support group on Facebook, and the HD mums in the U.K. and Australia particularly have shared some of their experiences (although I'm starting to ask for lots of details, starting today.)

Now THAT said, just yesterday they did an anal exam (sounds pleasant, no?) sticking fingers into her anus to feel around, and there was no enteritis-like "squirt" of fecal fluid relieving a pressure build-up as we've experienced in the past. Not only that but the surgeon who performed the finger-insert (pinky first, then index finger) said that her bowel seemed quite loose and stretchy -- "soft," I think was her actual word.

I'm frustrated (continually) and on multiple fronts. I realize answers may take some time, but I'm not sure the hospital is focusing on the correct research.

So, in the meantime, I'm trying to do what I can, on the side, to figure out potential reasons for her current condition. Like... who has she been around who may have had similar symptoms... and how were they treated... and what was the natural history of the disease? And, what other bacteria/viruses is this hospital equipped to test? For example, they tested a culture for rotovirus, but can they also test for norovirus? (Yeah, when I asked yesterday, her nurse said, "For what?" She had never heard of it.)

It's just sad to me that every little thing can take Bridgette this far down the road. An illness/germ that might be really bad for one kid can be 10 or 100-fold as serious for our special tiny person. Had we not brought her to the hospital on our own, for instance, I'm quite convinced she would be dead by now. That's considerable.

While typing this I've interrupted myself to let Bridgette sit in my lap and play games on PBS Kids and to watch Tinysauruses again and to cuddle up and read "If You Take A Mouse to the Movies" and to sing her to sleep for her afternoon nap (although I must say, the family next door is LOUD. The room is full of people and they are yelling at each other and the TV is on and they are quite literally letting their children hammer on the walls.)

It's 2:40PM now and no word from surgery, so I probably won't update again until she is post-op.

Wish her luck, please.

Thursday, February 24, 2011

Today's Update

Primary Children's Medical Center -- South Side.

Our room overlooks the north side entrance and the parking garage.




***Bridgette's Update***

Here's what we know:

--Bridgette is still seriously dehydrated (no urine output plus other indicators).
--Doing rectal irrigations: 120 clean cc's in, 300 yellow-green out.
--Still having watery diarrhea.
--Not vomiting today (fingers-crossed she keeps it up... well, down).
--Ate some Cheerios, applesauce, crackers.
--Has drunk almost a liter of Pedialyte in 24 hours, but we don't think much/any of it has been absorbed.
--On full-time IV drip.
--No TPN yet, but she has lost over a pound of weight.
--PCMC stool culture also returned negative for C diff as well as rotovirus.

What we don't know:
--Why she's this sick.
--What's causing it.
--How to fix it.

What we've done today:

With the negative culture results, baby is no longer in quarantine. That means for the first time in her hospital career, she has been able to leave her room with her IV tower in tow.

--So we've gone for rides in the hospital wagons...

(Next 2 Photos Taken by Bridgette)


Her Day-Shift Nurses, 2/24/2011 :)


Cruisin' Down to Radiology for a KUB


--We've watched the fish tank...


--We've even played in the playrooms! :)


(In this photo she's in the back corner with Jeff and her IV tower. I cannot tell you how much more pleasant a hospital stay is when you are physically allowed to leave your room.)


--She's gotten more tests...


--And of course we've watched TV, or as Bridgette says, "T!"

--This room not only has a "great" view, but it also has a DVD player, and the hospital provides a truly random selection of DVDs. Last night we watched Winnie the Pooh's Search for Christopher Robin (twice!), followed by "The Invasion of the Tinysauruses."

--Oh! And another thing. Our room is located near a free washer/dryer. You have to wait your turn (there's only one of each), but we have employed them twice already in less than 24 hours, her special blankets being as necessary to her survival as her IV fluids. Thank the stars she has TWO special blankets or we'd be hosed.

What we haven't done:
--Slept.

Jeff took the day off from work and is currently with Bridgette. So I am home for a nap, a shower, this blog entry, and an in-class course I need to attend tonight before I can finalize my place on a Red Cross disaster action team. Then I'll head back up to Primary's tonight and for the foreseeable future.

For her part, Bridgette is being pretty good, although she regularly points to the door and says, "Out!" or "Home!" She also regularly points to the taped-up-IV on her wrist and says, "Off!"

Sadly, she's getting very sensitive about people touching her again, friendly touches or not. If someone reaches for her, she curls her lip and glares in what I consider to be a very communicative gesture. Nurses being generally kind and helpful people certainly mean no harm, but they like to ruffle her hair, etc. That action is met by a scream and Bridgette punching herself in the head to get them to stop. I wish they would stop. They usually laugh. I don't think it's very funny.

Bridgette's also more possessive of what is "hers" right now, right down to her IV line. She would rather not have anyone touch anything that is "hers." Some of it is legitimately hers but when someone, say, picks up her blanket or her bear, Bridgette cries out, reaching for it in desperation. We've seen this behavior at home, but I wonder if her hospital visits are not the source (or an aspect of the source) of her need to control what she can control. After all, she does sometimes have to have her favorite comforts/lovies removed at the times she wants/needs them most. I suspect it has been traumatic in her own two-year-old view of the world.

Bridgette recognizes almost all medical equipment at this point.

At vitals' times (every 4 hours, day or night), she turns her head to expose her ear when she sees the thermometer. She holds up her pointer finger when she sees the PulseOx. She sticks out her leg for the blood pressure cuff, even though she doesn't like it. On the other hand, she thrashes and cries out for me when she sees the IV flushes and the rectal catheter.

Don't blame you there, babe.

Wednesday, February 23, 2011

Baby is at PCMC

Just a quick update, baby Bridgette was very very sick this morning so Kelly took here right up to Primary Children's Medical Center. She is getting an I.V. and they are running tests to see if she has enteritis (infection in the digestive system). Bridgette has been admitted for the night for now and Kelly will be staying with her tonight.

One way or another, to the hospital we go

Well we're off to Primary Children's today. X-ray showed considerable swelling in parts of her intestine and no one knows the cause yet.

This morning her eyes are deeper-set than yesterday. She's acting like she wants to vomit again. No eating. Won't drink her Pedialyte.

I haven't seen the X-ray myself, but the doctor at Utah Valley Regional Medical Center, Kurtis R. Kendall, MD, who wrote up the description said:

"Findings: Again seen is dilated colon. This has been present on multiple previous examinations, however, it has increased in prominence on today's study. On examination 3/1/2010 the cecum measured 4.0 cm. Today it measures 5.8 cm. On the previous study, transverse colon measured 3.5 cm and currently measures 4.5 cm. Small bowel loops are not clearly visualized. Surgical clips in the pelvis.

"Impression: Increased dilation of colon."

OK.

So, those of you out there who know anything will say... huh. She has no colon. No transverse colon. No cecum.

Does this guy know what he's talking about?

Those thoughts have entered my mind once or twice. For an official medical document, there're several stark errors.

In the end, no matter what you call it, the doctor saw increased dilation. So true. I could easily tell that without an X-ray because her belly is big.

At this point, I'm trying to get appointments with her surgeon and pediatric GI at Primary Children's, so that someone who is actually familiar with her and the fact she has no colon can look at the X-ray and maybe have more insight.

I'll try her surgeon first, as he is the guy I have trusted most through this whole process. We haven't seen him in over a year.

Her GI, while well-meaning, doesn't see eye-to-eye with me. (For example, when I went in to talk about our options for C diff control, he immediately tried to push me to do another surgery and give her a port-a-cath. Um. No.) And also, his record-keeping isn't great. (After he gave us one prescription a year ago, we did a phone consult and decided together to change it. When the pediatrician called last week to corroborate dosage, he had no indication of the change in his records. "That's not what she's supposed to be doing!" Oh really? Maddening. And, if you think about it, I couldn't have gotten a new prescription without... a prescription. Oy. The tales our eye-rollings do tell.)

And while I was typing that I was on the phone. Bridgette has a consult with Dr. Black at 3PM today if we can make it that long. She's really not doing well.

In the meantime I'm trying to set up an IV bolus infusion at home, but no one from Home Health Care is picking up the phone... except the operator (2 times out of 3)... who then proceeded 1) to hang up on me, and then 2) to transfer me to the wrong office in Home Health Care... where they also didn't pick up the phone.

I don't sound frustrated do I? No hammering keystrokes here.

Bridgette is beginning to have watery diarrhea, but a few minutes ago she took some Tylenol for me. If she is in dire straights before 3PM, we will have to enter Primary Children's through the emergency room then trip over 10 additional layers of nurses, interns, and attending physicians talking about her "colon" on yesterday's X-ray.

You know, we went to the pediatricians office last Wednesday (one week ago), and I requested that Bridgette be put on Zithromax and Vancomycin. I'm officially putting that in digital ink. If, when this all goes down, I am wrong -- you are welcome to nah-nah-nah-nah-nah at me all you want.

But if, in the end, that's the recourse they take and it fixes her? Well... you think I'm mad now? You ain't seen nothin'.

Tuesday, February 22, 2011

We Heart Books and Dogs

Here is Bridgette attempting to eat some cereal before her nap. I hope it stays down. Nothing like having your daughter aspirate on her own vomit! It's a most unpleasant way to wake up. And since we already took a shower today too (she woke up covered head to toe in poop), staying clean for 12 hours would be nice.


So these are her current favorite books. I know -- there're a lot of them. But we have *lots* more, so these really are her favorites. She goes in phases asking for one or another over and over. Then we shift to a different set of books. Then we shift back.

If I had to pick her *favorite* favorites at the moment, I'd go with The Icky Sticky Frog, Ten Tiny Tadpoles, If You Take a Mouse to the Movies, All the Ways I Love You, and The Pocket Scientist.

Then again, pick one at random and it could be her favorite that day.

The Pocket Scientist is pretty cool because she's learning about her own body (including her digestive system) as well as dinosaurs (she's picked up a ferocious dinosaur stance, complete with sound effects), flowers, birds, electricity, the water cycle, etc.

Today she looked up at the ceiling and said something I couldn't understand. Eventually I got it and said, "Lightbulbs . . .?" To which she responded excitedly, "Yeah! Bulbs!" That came from The Pocket Scientist section on electricity which we read last week.

The books are all spread out because she gets to pick one or two or three books to read together before each nap and each bedtime (the number dependent on how late it is, how sick she is, and how tired I am), and then we sing a song.

The book selection process is rigorous!

(I think that's partly a stall tactic.)

Current favorite songs are Baby Beluga, The Wheels on the Bus (we have made up several of our own verses, her favorite being "The doors on the bus go... PSSHHH...."), the Mickey Mouse Clubhouse theme song, the Little Einstein's theme song, Once There Was a Snowman, and Popcorn Popping on the Apricot Tree.


This is Chewy. He's my favorite. And despite everything that is going on, he would rather not be forgotten.


He likes to lay at my feet as often as possible and be rubbed on his snout between his eyes. In fact, he is laying under my desk now while I type this. :)

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:

2 WEEKS AGO

--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.

1 1/2 WEEKS AGO

--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.

1 WEEK AGO

--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.

1/2 WEEK AGO

--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.


Friday, February 11, 2011

Vacation Days 9 & 10 - Ode to Film

So! Four months later and the details of this vacation are growing hazy.

Go ahead. Breathe a sigh of relief.

I'll do my best to bore you anyway.

Day 9 was fantastic because we met up with our friends the Lindsay's.

Ryan Lindsay was in my MPH cohort (for those of you who have followed a while, you know this has nothing to do with defensive driving) and is now completing a PhD at the University of California at San Diego. He and his wife have two adorable little girls, one just older and one just younger than Bridgette.

My memory being hazy and all, I may no longer have my vacation days in order. But I know we *did* meet up with them, so I'm going to pretend it was on Day 9. They were kind enough to agree to watch Bridgette while Jeff and I headed out to do something by ourselves -- a vacation within a vacation, if you will.

Jeff and I were supposed to go sea-kayaking in the morning and spend the afternoon at a spa, both courtesy of Groupon coupons I had picked up earlier in the year. Scheduling the two to occur on the same day was nearly impossible and required more frustrating phone calls than I cared to count.

Okay. There were seven.

In the end, scheduling was one thing and reality was another. We started Day 9 with a message from the kayak guides telling us it was too choppy to kayak that day. I was really sad.

But we got to spend more time with the Lindsay's who then turned into martyrs/heroes and agreed to watch Bridgette *again* on Day 10 while we kayaked in better weather.

So Jeff and I monkeyed around for an afternoon, sans toddler, in shops that were so expensive we felt dishonest going inside (knowing in advance the hopeful salespeople would be left flat and disappointed, but ultimately not poor, assuming lots of people with lots of money shopped after us). Then we headed to the spa where we were pampered in tandem in delicately balanced rooms where the ch'i flowed with wafting scents of honey & lavender.

After we were washed and oiled and sauna'd, we drove back (rather later than we intended) to the Lindsay's feeling thoroughly refreshed. Kristen had made a delicious meal, and we were pleased to dine with them, chatting (rather later than we intended) about kids, people we know, public health, and stuff in general.

Now that I think about it, I do feel like I'm missing a day. I wonder where it went?
_________________________________________________________

Day 10 = Kayak Day = Best Day = An Ode to Film

Film . . . not cinema fare . . . but a sheet of plastic coated with an emulsion containing light-sensitive silver halide salts bonded by gelatin with variable crystal sizes that determine the contrast and resolution of the developed photos.

You know. That stuff we used before digital cameras.

We were so very happy that Day 10 dawned bright and clear and relatively warm (though still cold).

We met the Lindsay's at the beach in La Jolla, and they dealt with our toddler's sand-infused hair, lips, eyes, diapers, and juice bottles while Jeff and I got all dressed up to go kayaking.

The problem? Well, I couldn't (wouldn't) take my luscious Canon Rebel XSi with us because they assured us that we, and everything in the kayak, were going to get soaked heading out through the waves. They were right. (And it was *really* cold then.)

So I was optioned into buying a cheap (though not inexpensive) disposable waterproof camera from the kayak shop.

Enter photos, stage left.


Remember the days when your resolution was low and you didn't feel the need to edit *anything* in Photoshop because it was all kind of blurry anyway? Oh yeah. Those were the good ol' days.


(As a group tour, we were forced to dress in a way that would prevent us from taking legal action in case of accident. Say . . . if we were to paddle our kayak at such a high rate of speed that an inadvertent collision with sea lions caused us to be hurdled head-first into a freak petrel made of iron. Point being, we both felt a little silly. Also, per usual, Jeff's helmet didn't fit despite being the largest helmet they owned.)



Glad I didn't give my nice camera a bath in ocean water. Thus the word "disposable." (See following photographic examples.)

I can't really explain how much I love the ocean, by the way. This was my favorite day by far. I *love* the ocean. I LOVE the ocean. I could live, eat, breathe ocean. I miss it at all times, except when I'm there. When I'm there I forget about time and trouble and become one with the brine.


Jeff, on the other hand, thinks the ocean is okay. :)


Remember the days when you waited around for your film to be developed? And you just *knew* that ONE shot . . . you know THAT one . . . was going to be *perfect.* The anticipation! The excitement! The . . .

Aw. Bummer.


Remember the days when the photographer said, "Let me take one more, just in case," without being able to review anything on the LCD display first? It really was "just in case." And thank goodness.


Remember having no flash inside the magical cave of halos?



Remember when there were no buttons at all except for wind and click (I know, we're still talking disposable cameras though people), and you couldn't control a single setting? No shutter speed, aperture, ISO, auto-stabilizer? So easy.

So's you know, the house under that blob of sunlight belonged to Theodor Geisel, better known as Dr. Seuss.

This was also about the spot where we saw a billion tiger sharks. Or at least a lot. They were swimming all around/under our kayak.


Remember how excited you were when you got your first digital camera and you could take almost limitless photos of first events, like, the first time your first child touched the ocean?

But then remember how you used to have to ration your photos, balancing "firsts" with a maximum of 26 shots?



Though I'm sure you remember how exciting it was to relive those moments, two whole WEEKS after vacation, when your film was finally developed.




And finally, remember when you captured that one moment, the one perfect instance, the photo you wanted to display proudly on the mantel for everyone to see?

Only someone blinked.

Or, in this case, snarled . . .


Here's to all the memories! Cheers!