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?

Save the Date

We officially have the date for Landon's pull-thru/colostomy reversal surgery- Dec. 10th. We will drive up there on the 8th and stay in a hotel, and then first thing the morning of the 9th he gets admitted and placed on a clear liquid diet with frequent irrigations through the colostomy and his rectum. The surgery is sometime mid morning on the 10th, and then he stays in the hospital 7-10 days before discharge. After discharge they recommend we stay in Cincinnati a couple more days, and so again we will stay in a hotel and explore what there is to do in Cincinnati. I'm hoping to be home by the 23rd, which is Carson's (our oldest son) birthday. In case we aren't back in time we are having his birthday party on the 1st before we leave. It will be sad if we don't make it back for his actual birthday, but that was the way the scheduling had to happen. Aside from all of the other reasons that Landon needs prayers for his bowels to wake up and for him to have a quick recovery, that is another reason. So please keep him in your prayers until then.

On October 25th I have a phone appointment with Dr. Levitt, the surgeon doing Landon's procedure. I'm asking a long list of specific questions about everything. One concern I have is that anesthesiology wants to do a phone consult with me on Dec. 5th, just 3 days before our scheduled departure to Cincinnati. They are concerned with Landon's history of a previous cardiac arrest. Landon did go through over 4 hours of general anesthesia for his colostomy surgery and did fine when he was only 2.5 weeks old, but that was considered a life saving surgery and so they were more lenient on the conditions they would perform the surgery in. This surgery isn't absolutely necessary, yes Landon is doing perfectly, yes he could live his whole life with a colostomy, but this is a quality of life issue. I'm hoping to gain insight from Dr. Levitt on how likely he feels that it is that anesthesiology will either shoot this down or scare me out of doing it by discussing risks. I'm pretty nervous and anxious for both phone consultations.

Landon is still doing great. Still off antibiotics, still no infections. We are still doing irrigations 2-3 times per day, but we haven't tried to stop. Doing them is manageable and so it isn't worth the risk to stop doing them for experimental purposes. He is still gaining weight like crazy. All 3 of our boys had these matching shirts, but Landon's was in size 6-9 months. I put the other 2 boys in theirs, but figured Landon's would be huge on him. My mom was over at my house and insisted that I try it on him anyway and it fit! He's only 3.5 months old and it actuually fit! He is right on track with the size his brothers were at the same age, despite everything he has been through. Not to mention that most Hirschsprung's babies have some degree of difficutly absorbing nutrients and growing. We have been blessed 100 times for every unfortunate event that has happened and I am so thankful. I will probably update next after the phone appointment next week and let everyone know how it goes and what Dr. Levitt has to say.