Sunday, January 10, 2010

Spelling Off

Jeff's taking a turn at PCMC so I can sleep a few hours this afternoon. Thought I'd do a super-fast update first.

1st) There's little change in Bridgette's health today. She is taking Flagyl for enterocolitis & C diff (although the C diff is undiagnosed -- her stool samples are still being tested) as well as a pill none of the nurses could even pronounce for potential E coli (again, undiagnosed). Her temp vacillates with her Tylenol dosages. The pill gets mashed up and mixed with water, probiotics, and grape flavoring, but judging by the way Bridgette gags when she takes it, the grape flavoring doesn't quite mask the squashed up pill.

2nd) B. has had a second set of xrays today to see if intestinal distention has decreased. We haven't gotten the official readings back yet, but from my own limited eyes & experience, I thought her terminal Ileum was slightly less distended. The irrigations are washing out almost twice the amount of fluid going in (1 litre saline goes in; 1 2/3 litre green-brown slush comes out). She hates it and screams very loudly through the whole process, reaching for mom-mom-mom-mom and pouring out the tears. She has not vomited since last night, but she's also not allowed to eat or drink. Her meds have stayed down.

3rd) We have lots of questions. Although we always knew to watch for enterocolitis and are aware of many HD families who have dealt with it, there seems to be a dearth of straight-up "this is the way it is" kind of facts.

For example, B's signs & symptoms didn't fit a neat description and the ER folk almost sent us home after I.V. fluids. So, you have a lot of questions too? I'll do considerably more research when we're not in the thick of it, but for now, this is the best article I have found: Enterocolitis Associated with Hirschsprung's Disease.

6 comments:

Rosemary T said...

You are all in my prayers.
-Rosemary

JulieAnn said...

They are praying for her in the Denver temple. I hope you guys will be ok. Please let us know how we can help :)

Marilyn said...

Poor sweet Bridgette. I will be praying for you all.

Jennie said...

Sweet Baby! You are in our prayers too. Hang in there mom and dad!

jessica said...

Hi, I found your blog from someone else's blog some time ago. My 2 1/2 year old son has HD also. I just wanted to say we'll be praying for little Bridgette. We have only had one "possible" EC scare, but I panic every time his diapers aren't normal. I hope everything goes well and you get out of there soon!

Brooke said...

I can tell you've been living with this disease for 1.5 years, you're sounding like a doctor! (I know the feeling.) Reading that article makes me so mad about how little is known about this very serious infection - that the medical community has known about for a very long time. Really, really mad and frustrated. For us, every time Curly has watery or explosive poop, they put him on flagel, only last time he flat-out refused to swallow it - even throwing up when I shoved it down his throat. And most of the time, it's probably just a typical tummy bug or even teething - how do you know? So frustrating. I'm so sorry that you're going through this. Our thoughts are with you.