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.

7 comments:

Anonymous said...

GO BRIDGETTE GO!

Aunt Lynn

Anonymous said...

Keep munching baby . Hopefully there will be some good poop.

Tammy and Alvin said...

My fingers, toes, arms, legs, and eye are all crossed for you!

Lore said...

I hope, hope, hope that all goes well. Is she giving you any urine output? With all of the hydration going in intravenously, I would think there would be urine. Those fluids don't ever have to touch her digestive system. Have they checked her kidney function? Let's just hope that once she begins eating regularly, all will go back to "normal." Praying for all of you.

Laura said...

At this point I don't even remember exactly how I found your blog but I found it a while ago during my searching for information and others dealing with HD. My son also has total colonic HD and I have been keeping up with Bridgette lately and have been hoping that things are figured out soon and she can get out of the hospital! Just wanted you to know that even though I don't know Bridgette or your family, you are all in my thoughts! - Laura Taylor, Charlotte, NC

Lisa said...

Kelly, there are many reasons why I admire you and just one of them is your strength through the trials Bridgette has to go through. I'm glad to have the privilege of knowing you for as long as I have. Hang in there.

Brooke said...

I hope they come up with some good answers for you in the big doctor pow wow, instead of more frustrations. Keep eating little girl!!