Phone Appointment

Hello again! Today I had a phone appointment with Dr. Levitt, Landon's colorectal surgeon in Cincinnati. This was my first time speaking to him aside from exchanging a couple of emails nearly 2 months ago when Landon was staying so sick and I contacted him for a second opinion. I was pretty intimidated by the thought of speaking to him, he is pretty much a "celebrity" in the Hirschsprung's community. People travel from all over the country- even other countries to see him because he is by far the most experienced surgeon when it comes to Hirschsprung's. Anyway, I guess I expected him to be arrogent, and to my surprise he was very down-to-earth and friendly. He didn't make me feel like the crazy, over-protective mother that I am.

Rather than typing a long paragraph that's difficult to follow, I'll list the questions I asked and his responses:

Me: After reviewing Landon's records, what is your opinion on the reason that Landon went into cardiac arrest on day 6 of life?
Dr. L: It is hard to say with the information that is provided and without seeing him around the time that happened. There are several types of complications that can arise from Hirschsprung's associated enterocolitis (HAEC) that could have led to that event.
Me: So you do think it was related to HAEC, though?
Dr. L: Yes
Me: That leads to my next question- all the literature available states that HAEC is nearly impossible to get while a leveling colostomy is in place. On the other hand, it is fairly common after the pull-thru procedure. Since Landon has had so many issues with the colostomy when the risk is so low it makes me nervous for what will happen when the risk is significantly higher....
Dr. L: I suspect that there is a problem with the colostomy, that the passageway is too narrow to allow him to empty completely. I would expect improvement after the pull-thru, you may or may not have to continue doing irrigations.
Me: The irrigations have been very effective, doing them 2-3 times a day has kept him healthy. But I'm concerned with how quickly he accumulates bacteria. Is there any danger of bacteria going into his blood stream when you open up his large intestines for surgery?
Dr. L: As long as the proper procedures are followed through before the surgery, no. (Referring to giving him nothing besides clear liquids the day before and doing frequent irrigations in the hospital before surgery)
Me: Which type of pull-thru procdure will you be doing?
Dr. L: Swenson. In my experience it has shown to be the cleanest approach and the best way to be sure that none of the affected colon is left behind.
Me: Landon will be having the surgery right at 5.5 months, but he is currently approaching 4 months and getting to the point where he could start solids. Do you have any recommendations on whether it would be better to start solids and get him used to them while he still has the colostomy or if it would be better to hold off?
Dr. L: Either is fine. You can do the same as with your older children, it shouldn't make a difference.

That concluded our conversation. I feel reassured that everything will be okay and much more prepared to go do the surgery now. I can't believe it is barely more than a month away. At least now when we have bad days with the ostomy (bag falls off in public and leaks, huge messes, bags won't stick, etc.) there is light at the end of the tunnel. If Landon's colostomy was functioning like it was supposed to and kept enterocolitis away I really don't think I would be willing to do the pull-thru yet. I would do it eventually since it is a quality of life issue for him, but not yet, not at 5 months. As difficult and expensive as the colostomy care has proven to be, I would do anything for him to just get to be healthy for a while without uncomfortable interventions. Who knows, maybe that day will come sooner than expected after the pull-thru. That child has done nothing but beat the odds so far, why would he stop now?