Saturday, June 13, 2009

Home again, home again...

After a relatively quick discharge from 10 East, as of this afternoon we're back home, with a sleepy (for now) baby catching some well-earned Z's in her crib.

The detective work Erin alluded to in her last post unfortunately didn't leave us with a firm diagnosis to explain the blood we've been seeing over the past week. We can pretty confidently rule out infection (all of her cultures came back negative and they ran pretty much everything) and allergy would be a bit strange (it rarely presents like this and she's on the most hypoallergenic formula around), which leaves us with the possibility of an anastomotic ulcer, bacterial overgrowth, or a generic ulcer of some kind in her GI tract.

Let me unpack those a bit: An anastomotic ulcer is a sore that forms at the junction where intestines are reconnected (or re-anastomosed, to use the surgical term of art). These are "not well-understood" according to Blaise's GI doctor, but to my understanding the deal is that you can end up with a pocket of tissue near the reconnection point where bacteria can collect. If they do, you can end up with ulcerated tissue that may bleed intermittently. You can treat this with antibiotics, so long as there hasn't been extensive structural damage. Do we think Blaise has one of these? I kind of think not, and here's why...her "lowest" anastomotic juncture is about 30cm north of where her large intestine meets her small intestine. That means bleeding that starts there has to get all the way through those 30cm, then through her colon before we'd see it in a diaper. That much travel usually means you see blood that's (1) not bright red, and (2) mixed in with the rest of the diaper's content. We've been seeing exactly the opposite, which isn't impossible, but would require "brisk bleeding" and "rapid transit" through the bowel. We're not sure either of those things are fair descriptors of Blaise's GI profile, so we're a bit skeptical.

OK, so what about bacterial overgrowth? Some kids with short bowel end up with bacteria from the colon in their small intestine. It can proliferate, and lead to all sorts of nasty stuff. Bad breath (due to an excess of hydrogen), bloating (too much bacteria making too much gas), "dumping" or "stooling out" which is exactly what it sounds like, and yes...blood in the stool. here's the thing though: Blaise has an intact ileocecal valve (which is at the boundary between the large and small intestine) and that usually means overgrowth isn't so much of a problem. Moreover, she's got none of the other signs I mentioned above...just blood.

So what's left? Honestly, things get very nebulous here. Maybe she's got a weak capillary somewhere. Maybe there's a bit of tissue that's been moderately ulcerated for a while and with more volume just gets irritated that much more easily. At this point, it's hard to say. A member of Blaise's care team even told us that some kids just DO this, and they never really work out why. As long as it doesn't make them physiologically unstable (and Blaise's labs never budged from the normal range) sometimes the team just decides to live with it.


So what are we going to do? For now, hang out at home, take it easy, and try not to worry about small spots of blood that we might see. We're keeping a close eye on her for any other issues, especially anything that signals dehydration, electrolyte imbalance, or considerable blood loss. She's also been scheduled for a colonoscopy on Tuesday at 2pm. To be honest, we'll have to see what happens with that...her surgeon seems less than thrilled at the idea of putting her under general anesthesia again if we continue to see mild, intermittent bleeding. Her GI doctor seems like he'd really like to figure this out (and so would we) but also agreed that it's less clear they'd see anything useful if she's not continuing to bleed. We're going to let them hash out what they think about doing the scope vs. sitting it out, especially since we remain a bit on the fence about it too. An answer (hopefully an easily treatable one) would be nice, but so would avoiding another procedure and a trip to the PACU. Hard to know what to hope for in some way. I think most of all I'd like something clear-cut to happen: Having the bleeding vanish would be awesome, but if it has to be here, I'd rather it just be persistent enough that we know we have to go track down the source. This whole "maybe it's significant, maybe it's not" thing is just killer. We've been fortunate up to now insofar as it's been obvious that the surgeries and procedures Blaise has had were necessary to improve her condition. This puts us in some unfortunately murky waters for the first time. Is it worth general anesthesia and a scope to lay eyes on what might ultimately be something as elusive as a weak blood vessel on the intestinal wall? If she has some moderate overgrowth, do we give her antibiotics to clear it out even though doing so makes it more likely she could have further problems? Basically, are we sure that the relevant cures are actually not worse than the disease?

For now, we're trying to just enjoy having her back here. We started with the trip home from the hospital. Blaise had a GREAT car ride home. Seriously...she laughed the whole way over the BU bridge and giggled a lot as we went up Mass. Ave. At home she embarked on a dedicated campaign to devour Erin's index finger, making some impressive growly noises as she nommed on Erin's knuckles with vigor. As far as the ongoing Battle of the Bottom, some small specks of blood, but not so bad. I think we may take our cues from her for the rest of the weekend. If Blaise seems happy and playful, I think we'll try not to worry so much. After that...well, we wait and see.


Hopeful thinking said...

By any chance do you know which part of small intestine Blaise has removed ? And how much ... I just gave birth to my son a week before his due date in a matter of 3 hours we were told he needed surgery do to volvuous of his mid gut .. Best day he needed another surgery to removed some more and attach the ends .. IV been doing tons of research trying to learn as much as I can to maybe even figure out a time frame of how long for tube feedings and things of this nature I have went back to your very 1st post and have been reading them all IV been looking into so many cases .. He now has 42 cm of gut but unfortunately it was mainly his jenjum which restricts him from taking my milk because they can't increase feeds with it being that it is to fatty .. Sorry for the long ramble just this past week has been rough me an my fiancé had no idea it was a healthy pregnancy up until birth after giving birth we were hit with spikes curve balls now we're just trying to remove the spikes one by one

Benjamin Balas said...

After her first surgery and a contrast study to determine if she had any large intestine, we knew that Blaise had her entire duodenum, a short portion of jejunum, her entire colon, and probably some amount of ileum attached to the large intestine. During the second surgery, they discovered that she did have more terminal ileum than they had thought and they also found an additional piece of intestine that they were able to attach between the upper and lower tracts. The thing is that we don't know for sure what kind of intestine that middle piece is, but the team's best guess at the time was that it was at least partly jejunum.

Ultimately, following that second surgery, we were told she had approximately 45cm of intestine from the end of her duodenum and that she probably had some amount of all three kinds of small bowel. One thing I can tell you is that our team went VERY slowly with feeds, oral and tube-based, and it frustrated the living daylights out of us but it did end up working out very well.

Please just let us know if we can answer any other questions - best wishes to your family, and feel free to write any time.