July 14, 2011

"Life moves pretty fast. If you don't stop and look around once in a while, you could miss it." -Ferric Bueller, 1986

The same could be said about diagnoses made in the NICU. In the last 24 hours the path ahead has changed at least a couple of times, shifting quickly from possibly being discharged to exploratory surgery scheduled for this afternoon. Now, the path ahead has changed yet again.

Our little Rory is proving to be a medical mystery of sorts, defying all textbook expectations and thumbing her nose at the doctors' combined knowledge and experience. The x-ray they took yesterday suggested the distention of her bowels was getting worse, prompting the reinsertion of the tube down her nose to decompress her, the return of the IV, and the complete removal of feeds (again). Additionally, they added enemas every six hours to clean her out and decompress her faster, ultimately prepping her for the intended surgery today. But things move pretty fast in the NICU...

As of right now, the plan is to delay surgical exploration until next week, giving Rory's bowels time to decompress and perhaps more importantly, relax. Try to keep up here, because this is where you might get lost, or you may think you're reading a previous entry. They are thinking her situation could be...wait for it...Hirschsprungs disease. More specifically, an even more rare form called Ultrashort Hirschsprungs disease. This is where the problem effects such a small piece of the large intestine that it gets missed in the typical biopsy. To check for this, they'll perform another biopsy, but rather than random, circular snips of the bowel, they'll cut a long piece for the testing. This allows them to see exactly where the ganglion cells stop, if in fact that's the issue. In some cases, this biopsy procedure even resolves the issue.

They will also perfom laproscopic surgery at the same time, making a few small incisions in the abdomen to insert cameras and look around, remove her appendix because its not necessary in humans anymore, and snip out another piece from higher up on the intestines that will be used to biopsy for another, even rarer disease. But I won't post the name of that so you can't go google it. It won't do anybody any good.

Planning on 5-7 days for the biopsy results. So we have AT LEAST two more weeks in the NICU, pending further developments and results. All the while, little Rory will continue her residency at Rady Children's hospital. And we will stay on at the RMH, as long as they'll continue to have us.

Thanks to everyone, friends, family, coworkers, and complete strangers for thier thoughts and prayers. Keep them coming.