Whhhheeeeeeeee!!!!!!

Strap the kids in, it's time for another ride on the emotional roller coaster that is our life in the NICU. Got a message from the wife this afternoon that indicated we were being moved to the 'intermediate care unit'. That certainly sounds promising given that 'intermediate' implies our child is in better condition than 'intensive' suggests. However, we were none too happy about it given the fact that along with the new location comes a host of new doctors. And we now know from experience, when a new doctor comes on the scene, they bring their own little black bag of tricks with them. They have their own opinions about your child's care and how to manage it. They have their own preferences for how things get done. They have the power, and control to take the treatment process an entirely different direction from what's already been established and planned. So we voiced this concern. And maybe we bought ourselves a few more days in the NICU, remaining under the watchful eyes of our previously established and somewhat consistent team for the time being.

Administration drama aside, Rory's path ahead is still very much in flux. ALL BIOPSY RESULTS CAME BACK NEGATIVE. Negative, meaning that she does not have any of the diseases they were searching for with those particular tests. So, the great results we've been getting with the rectal dilations have overshadowed everything else and have become the basis and focus of the treatment process. I was able to witness these results today - yay.

There was brief talk about sending Rory up to Children's Hospital Orange County (CHOC) because they are the only regional facility that performs anal-rectal manometry on babies. You'll recall from your high school chemistry class that a manometer measures pressure (those of you that stayed awake). This test uses a ballon-like object inserted at different depths to measure her ability to 'push' on the contents of the colon. But this won't likely happen because they've gained significant information from her response to the rectal dilation. Thank God, I don't think I could bear an invoice from a third hospital in less than two months, especially one that's Out-of-Network. A man has his limits!

Rory's response to the rectal stimulation reveals three important points:

1. She can stool (we already knew this, but it's reassuring)
2. They can feel her rectum pushing back against the probe, which confirms some level of proper function, and minimizes the information to be gained by the manometry.
3. Whatever the cause of the restriction, it must be within 0-3 cm of the anus (the length of the probe), because the stimulation causes a successful stool.

So it would seem we are at a crossroads and will have some decisions to make about the path ahead. We have a meeting scheduled with the NICU doctor and the surgeon tomorrow morning. Basically, our options boil down to the following:

1. Continue feeds as-is, eventually going home with a plan that consists of rectal dilations at home, and weekly (or more) doctor's visits to monitor progress and buy some time while continuing to investigate the issue. This may sound simple enough, but it could drag on a while, and apparently high school students have an aversion to parents trying to implement this treatment process.
2. The symptoms and responses to treatment that Rory has presented is consistent with...you guessed it, Hirschsprung's disease! (Docs love to use the word 'presented' to describe all of the evidence that they've accumulated) So, if it walks like a duck, if it quacks like a duck, and if it stools like a duck, then treat it like a duck. No, not blast it out of the sky with a 12 gauge shotgun. But rather, perform the pull-through procedure the same way they would if they had a biopsy result that confirmed Hirschsprung's. The thinking is that this would correct the issue that appears to be located within that 0-3 cm range, whatever the issue is. 
3. The ileostomy option. Don't like this one, but it's still on the table.

So there you have it. If you've read this entire post, you are as up to date as we are at 9:00 PM on Wednesday night. Oh yeah, and if you're my boss, I'll be in a little late on Thursday.