Wednesday, January 13, 2010

Quick Update

Sorry to leave you without updates for a few days. There wasn't much to report, and when there was, I hadn't any time to do it.

Bridgette and I are home. She was discharged last night around 5 p.m., so we were stuck in Salt Lake City rush-hour traffic trying to get back to Utah County. When we arrived, I discovered that the only pharmacies in the county who could compound Flagyl were closed, so my brother and I drove back up to Primary Children's last night, not returning until close to midnight. That wasn't initially on my list...

So Bridgette is not better, but she is better than she was, and at this point there is nothing they were doing at the hospital that we can't do at home. She continues to have C diff related enterocolitis with around-the-clock rectal irrigations and antibiotics/probiotics. The irrigations are on an 8 hour schedule, with Flagyl every 6 hours, so no matter how we try to swing it, that means we're up at least twice in the middle of the night.

Her first home irrigation resulted in an explosion that was extremely messy. Our second irrigation was around 6 a.m. and was much more neatly feated.

To accomplish a rectal irrigation, we have to insert a rubber catheter (~18") through her rectum and up into her Ileum as far as it will go. The catheter is attached to a 60 mL syringe, and we wash her out with homemade saline solution. What will pour out naturally through the catheter returns that way, and what does not come out on its own, we attempt to draw back with the syringe. We do this three times in a row at every irrigation.

It sounds fairly simple, and in concept it is. However, her bowels are sick and pressurized, the process hurts our baby, the stuff coming out is contaminated with C diff, it's somewhat hard to catch (especially when it explodes out around the catheter or pushes the catheter out completely), PLUS, Bridgette is an excellent thrasher. Lest you think she doesn't walk because she has weak muscles, allow me to dispel that myth post-haste.

We have to watch for several symptoms: loss of appetite, return of fever (101.5+), distended belly, or no urine (and other signs of dehydration). If these occur, we have been commanded to return her to the hospital.

We are also supposed to be sure she can stool, but this is a problem because we're trying to wash out all her stool in the irrigations. Makes it hard to tell whether or not she can stool on her own. Also, she ate half a banana yesterday (the most she has eaten in weeks), and guess what was sprayed all over us and the walls after our first home episode? It's true. Delicious. This also makes it difficult for me to know how much liquid/ nutrition/ antibiotic she is absorbing since we feed her then irrigate her.

Even after lots of questioning, no one could really tell me "why" this happened. Hirschsprung-related Enterocolitis is simply a fact of her Hirschsprung existence. For whatever reason, the natural forces fighting each other within her intestines are easily unbalanced, causing overgrowth and shut-down. Once her intestines distend and stop absorbing, she is in serious danger. Had we not taken her to the hospital, she would have died within a couple of days.

I have xrays of her distention that I'd like to post, but I'm having trouble removing them from the xray software. When we can figure it out, I'll post again.

So, her current status -- Bridgette is in semi-quarantine. She shouldn't really be around people for at least two weeks at which point we will return to PCMC for another C diff stool test.

I call it "semi-quarantine" because she shouldn't have visitors or go anywhere, but Jeff and I (and Uncle Jon) obviously have contact, and by necessity of life, we are required to continue living... working, teaching, buying groceries, etc. We are taking good measures to protect ourselves: rubber gloves, lots of soap and water, as little contact with her fecal matter as possible... and since that isn't really possible... more gloves and washing up.

Speaking of Uncle Jon, he is playing with Bridgette while I write this update. And if you've gotten this far, I have good news as a reward for your diligence. Bridgette crawled today!!! Real, honest-to-goodness two-hands, two-knees, move from one room to the next crawling! It's so cute! It makes me think of Yoda's little wiggling butt when he's rifling through Luke's belongings on Dagobah. Seriously, such puppety, jerky small-body motion. How can you not love that?

Mine! Mine!


Anonymous said...

Again, I'm so sorry all this bad stuff is going on. But, GO BRIDGETTE on the crawling! Maybe you'll post a video?


Lore said...

Sorry about the continued C-diff focused lives you are all having to live. Isn't modern medicine miraculous, though? What would we do without it? And aren't you glad that you took her to the hospital when you did? Hope improvements continue and life can return to "normal" soon.

And I must concur with Lynn, GO BRIDGETTE! I want to see video of the crawling too. Any idea what prompted this advancement today? After a special toy? Trying to get to mom-mom-mom-mom?

Love you,

Matthew L said...
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Mary Liechty said...

Good thing that you took her in when you did. I hope she gets better fast.

I'm so excited that she is crawling. Wahoo....GO BRI!


kelgrandy said...

Oh my word Kelly! I'm so excited that Bridgette crawled today. And so sad for all that she, and the both of you, are going through. Thank heavens for modern day medicine. And for parents who love a child so deeply that the sacrfice is more than worth it. Hang in there.

Heidi said...

Yay for crawling! It is pretty cute. :)

Jacqueline Miller said...

Thanks for the update. I've been thinking about you guys a lot lately and was curious about how they were treating the enterocolitis... and I admit, I keep thinking "that could be us." Just amazes me how so many of us are told that after the pull-thru everything will be fine, and then you learn about all these other things. I'd love to hear how you're getting her to take the flagyl. Max is so bad about it that I think if he develops a really bad infection, we'd probably have to stay in the hospital for the duration. Nothing I've tried has worked.

Take Care! And woo hoo for crawling.

123 checkoutourfamily said...

So glad to hear an update. I'm also thankful for modern technology and that she was able to get the medical attention needed. Hope everything clears up soon and I can't help but smile when I visualize the crawl.Too cute!It seems so often that when something goes wrong,something else goes right. Brayden had an accident at the store the other day(and I had no change of clothes)and he reminded me that he stayed in his bed all night(he's been getting in bed with us and we're trying to break the habit).

Tammy and Alvin said...

I'm glad you got the time to write an update. We've been thinking about you all. Hooray for crawling! Nice to have a bright spot in the midst of everything else. She's a trooper (she must get that from you and Jeff!)

Love ya!

Chelsea said...

I AM SO HAPPY SHE'S CRAWLING!!! What a fantastic accomplishment. And I love the Yoda analogy. I can't wait to witness it myself.

Yes, I know what "quarantined" means, but if you'd like help pinning her down, I volunteer to help with irrigations. Just give me a heads up so I can find a sitter.

Perhaps this isn't my place, but I'm proud of you for taking her to the hospital. Way to be in tune with your daughter and your mommy instincts. You're doing great!

Lisa Merkley said...

I always knew I liked you.

Good luck with your health care at home. And just remember that it's totally okay to cry sometimes. I'm crying and it's not even my baby!! You sure must have gotten an angel. (One that I would love to meet sometime....I'll be in UT at the end of Feb. for Emily's baby, so maybe I could see you then??)

Scott said...

I read the entire post and that's great news Bridgette is crawling. Yeah! I think humor definitely helps through hard times, and I'm glad to see a lot of that in your blog writing.