On Sunday (the 29th) we arrived back up at Cincinnati. We checked in at same day surgery on Monday morning for Landon's ileostomy surgery. Once we started getting checked in, we realized that it was down on the schedule for an ileostomy OR a colostomy. This was the first I had heard of the possibility of doing another colostomy and I did not agree with that plan and so I requested to speak with Dr. Levitt. If you are wondering why I did not want to do a colostomy again, refer back to July 2012-December 2012. It involved recurrent enterocolitis and having to irrigate through the ostomy. Dr. Levitt was very understanding, but explained that if we could get away with doing a colostomy it would save Landon a surgery because it could prove that the section of colon used was functional, and then when we go to do another reversal/pull-thru he would pull thru the site of the colostomy and remove the rest of the colon. He showed us three possible sites of the colostomy, two in the left colon and one in the right colon. He wouldn't know for sure where it would be placed until he got inside and did an exam and another full-thickness biopsy.
Before Landon went back to surgery, I asked about something that has been on my mind. Something very controversial in the colorectal surgery world- intestinal neuronal dysplasia (IND). Hirschsprung's disease occurs when a portion of the intestines is lacking ganglion cells, IND on the other hand, is thought to represent a spectrum of neural-crest malformations rather than a distinct disorder, but diagnosis and treatment are controversial. I stumbled across it while researching complications and reasons for a "successful" pull-thru (by successful I mean that biopsy confirms aganglionic segment is removed) to not be functional or truly successful. The events over the summer (reference July 6th blog entry) reinforced my suspicions that Landon had another segment of colon that was not working. My experiences doing frequent irrigations that seemed like stool was "stuck" in a particular location and two contrast studies which showed a narrowed segment led both our St. Louis surgeon and myself to believe that another segment of colon was aganglionic. But then we received confusing biopsy results from both St. Louis and then confirmed in Cincinnati that ganglion cells WERE present. Here is a review of what we thought we were up against before the biopsy shocked us all:
Now that I've backtracked, I will get back to what went on last week and how it relates. After finding out that what seemed to be a dysfunctional segment of colon DID contain ganglion cells, I wondered if it was affected by IND. Dr. Levitt explained that he did not feel that IND was separate from HD, he feels that it is simply just "transition zone." I thought that my hopes of getting some type of diagnosis to explain why Landon is going through what he is were crushed. Soon after, Landon went back to the OR.
The surgery went well, and Dr. Levitt came out to talk to us. He explained that for nerves to be functional in the colon, they need to be 40 microns or less in size. The biopsy they took during surgery showed that Landon's were hypertrophic in another section of colon, meaning that they are too large to function properly. It's a mystery how this has been missed in the 3 biopsies that have been done in both St. Louis and Cincinnati, but we were relieved to finally have an answer. Approximately another 7 cm or so is affected, and so once it is said and done Landon will have about half of his colon left. For now, he has a colostomy in his upper left abdomen. Dr. Levitt was able to use the same scar from his previous surgeries, and so no more cosmetic damage.
Recovery was a breeze, except for an unwelcome, disturbing odor that came along with the return of Landon's bowel function. The odor was absolutely horrible, and quickly filled the entire colorectal unit every time we emptied his bag to the point where we overheard people outside the room commenting on the smell. This bought us a ticket to isolation and a stool culture with the suspicion of c.diff. Fortunately, the stool culture was negative for c.diff or any other type of growth. They discontinued the Flagyl and we were discharged on the 3rd. We made it home late that evening.
At 3 a.m. I woke up to the sound of heaving. Landon's crib was full of vomit, so I changed his bedding and cleaned him up and put him back to bed. I went back to sleep for about 30 minutes and we repeated the same routine. We did this a third time and I was out of clean bedding and so I threw everything in the washer, woke John up to take over, and I went back to bed for a few hours. When I got up it was time to do a bag change. When I removed the bag, we found something very disturbing looking. ***WARNING- This is absolutely disgusting. I'm sharing this for anyone else that is weird like me about cool medical stuff or for any HD parents whose child might be getting an ostomy and could have this happen. Side view and front view. (Trust me though, I did not find it cool at the time. I can only look at it now in hindsight without freaking out!)
If you viewed the images you have saved me the pleasure of brilliantly selecting adjectives to describe the way it looked. If you did not view the images I will put it this way- it looked dead and/or infected. That appearance combined with the vomiting was enough to get us back on the road to Cincinnati only 18 hours after arriving home. After a wonderful ER experience (no sarcasm, really.. we got straight in and the attending physician didn't waste any time- he called for a surgery fellow right away!) we were admitted back to the colorectal floor. They did an abdominal xray which showed possible ileus, but no big deal and it seemed to have already corrected itself. They repeated the stool culture, and while it was pending they put him back on Flagyl. Now we get into the fun of what happens on weekends/holidays when residents are the ones running the show. I hate to be mean, but we have had A LOT of bad experiences with residents in Cincinnati.. like say... being told Landon had c.diff TWICE when he really didn't, being literally shouted at for taking a bad photograph of Landon's first ostomy which was "misleading" (I reported that incident!), and a few other incidents with that same perpetrator as the shouting incident being catty with me about a variety of things. Anyway, on this occasion the stool culture came back negative (whew!) but the nurse came in with his next dose of Flagyl. I asked why he was still taking Flagyl since the culture was clear, but could not get an explanation. In case you have missed this in just about every entry I've written- I DON'T LIKE GIVING LANDON FLAGYL! The best explanation I could get was "it's in the orders" and "it's probably a precaution." Great. So we waited out the weekend and finally this morning came around with the return of Dr. Levitt. Come to find, Landon's first stool culture from the 1st actually did grow something. It was not c.diff, but I did not find out what. I was too distracted trying to process what was happening to ask any specific questions. They had left him on the Flagyl all weekend because of what had shown up on the first stool culture, which I guess we never would have found out had we not returned. Here's the kicker, though, Flagyl does not even cover that particular strain of bacteria. Dr. Levitt switched Landon to a new antibiotic, Cipro, and sent us home on a 10-day course.
That brings us to right now- Landon has had 2 doses of Cipro and is sleeping peacefully in his room. I'm getting ready to go to bed in my own comfortable bed with all 3 of my children under one roof and right now all is perfect and right in the world. The foul odor has already cleared from Landon's ostomy output, so it seems like the Cipro is what he needed. Here is the best part- the ostomy bag that Landon has on right now has been on for 4 days! Woohoo! We switched to a Hollister two-piece system, added an ostomy belt, and got some great tips from a very experienced ostomy nurse and this is already night and day from our last experience when we were lucky to get 24 hours out of a bag. Thanks to everyone that has kept our family in your thoughts and prayers!
