Tuesday, February 17, 2009

Gut bugs with attitude

In December Ellie's ostomy started to misbehave. A misbehaving ostomy dumps fluid and is a real hassle for us since we have to watch her hydration and supplement fluids to keep her from going dry. It is also a hassle because dumping food gives the food less time in her gut to be absorbed and slows her growth.

If my Mom and Dad ever forget my plumbing, now I have a t-shirt with a diagram...

We had lots of theories on why she was dumping. A food that disagreed with her. A physical 'plumbing' issue that was caused by the catheters in her manometry study. Too much formula. Too little formula. Gut bugs. You name it we thought about it as the cause of the trouble as we watched her dump more fluid than a full grown adult should each day.

After a few weeks we talked to her doctors and tried to manipulate things to make her stop dumping fluid. Some things worked for a day or two but there was always a HUGE day at the end of the good days that set us back.

Finally we flew against our assumption that her ostomy was protecting her from an over growth of a carpet of bad intestinal bugs called small bowel bacterial overgrowth (SBBO, for those that did acronyms like I do) and we started her on Flagyl, the standard antibiotic for over growth. Since her version of short bowel left her without the valve that keeps the good short bowel bugs and the bad large bowel bugs in their appropriate places (the ileo-cecal valve or ICV), the bugs sometimes migrate to be where they shouldn't be. Snaking a couple of catheters in there in December may have helped things find new homes as well.

A week of flagyl and nothing had changed. Flagyl just didn't touch them which made us a bit anxious that we wouldn't be able to find the cause and that she may just dump a lot for a while.

Not fun or really good for her.

Then last week her doctors pulled out the big guns and started her on a course of Cipro. Yes, the same stuff that they give to anthrax victims. Heavy-duty drugs.

Voila! Presto-change-o, things dried up over the weekend.

It seems that Ellie may have had some super-powered bugs in her gut and just needed the heavy artillery to fight the fight for her.

Or we could be entirely off the mark and it was just the water in Maine this weekend.

No matter the change that brought it about, things are on the upswing and we hope to get moving forward again sometime soon.

If you are curious, here is the detail of her t-shirt, made for her by a very talented artist friend of ours in Vermont:

Technical Difficulties

We're not sure why things are/were blank but we are working on it.

Thursday, February 12, 2009

Treading water...

More of the same this week.

Lots of unclear action from Ellie's ostomy with up days and then down days. We are taking the lithium approach to these-riding neither the highs nor the lows but watching our girl be happy in the middle of these waves. She just doesn't seem to notice what her numbers are doing. Which is nice but underscores the need to watch all of this very closely.
We have been in touch with her doctors at Childrens and everyone is watching her these days and thinking of physical, chemical and biological reasons that things are going screwy. We are going to try a course of a new antibiotic this week and see where it goes.

If things stay this way we may need to check her in for a few days to go NPO (stop feeding her) and let her pipes clear out. That would likely mean another round of TPN but after two months off we aren't so concerned about that for a few days.

We have never been so glad that we count everything as we have been in the last few weeks. Having 'the numbers' makes everything a bit more controlled, gives us an idea of how things are going, and tells us when we might need to call an audible and change course.

we are off to Maine to visit my parents and fmaily for a few days in the morning. Maybe what her bowel needs is a change of scenery or a dose of Aunt Beth fawning over her...

Wednesday, February 04, 2009

cha cha cha cha chaaaaaa Cha!

So we are better? We went to clinic last week and she weighed in at 14.2 kilos. That is down from 14.28 two months before. Needless to say they were not ecstatic. They gave us a month to get her gaining weight again. They also agreed that the stinky high output is probably due to bacterial overgrowth. So we did a week of the antibiotic Flagyl. We are now taking a week off and will do two more rounds of one week on, one week off.

We are also looking into a different vitamin, because we were able to tie a few of the high out put days directly to her vitamin. So we are looking into tablets or chewables.

I hate that we had to use Flagyl, I hate messing with the flora of her bowels. But it had to be done. So now that we messing with it, we are going to look at and start pre and probiotics. Thank you everyone that sent info about what you use. It gave us some good info to start with. Why re-invent the wheel, right?

Ellie is just like she always is.... a wild woman.
We on the other had are getting a bit tired of the "short gut cha-cha" and are ready to stop dancing for awhile. It seems like we have a good day followed by a bad day, and repeat. But amazingly today is day our first of 2 good days in a row. So we are hopeful. Good days usually mean weight gain and that is a good thing.

Other than the output thing we are all doing well. Ellie loves ballet/tap and Gynastics are fun and scary with the wild woman. As you saw in the previous post, Ellie is into story telling. She will tell us whole scenes from Shrek and almost all of Green Eggs and Ham.
Hey Max! Try this one!
We had a bit of an eye opener today. Ellie started telling me about the "special doctor". I asked for clarification as to who and what the special doctor was. She explained that at the "special doctor" she gets a big white bed that goes up and down, that there is a big TV on the wall and there is also a brown table that goes over the bed that we put her train set on. Yeah, that would be the hosptial that she is talking about.

After I picked my jaw up off the floor I asked her if she liked the "special doctor", and she replied, "Yes it is very fun!" That took a little of the sting out of the fact that our "she won't remember this" time is over.