Landon is officially a year old now! We celebrated his birthday on Saturday and he was able to enjoy his first cupcake during a Superman themed birthday party.
What a year it has been! Even though there are still gross motor and feeding issues that are being addressed, he is doing so well for what he has been through. He is getting stronger every day and is doing better at standing on his own and taking steps with a push-toy. The most amazing area of all, no doubt about it, is his communication. His receptive vocabulary is HUGE. This child understands everything. Any time we have a conversation about anything, he is looking around the room at what it is we are referencing. He is also starting to consistently use several words. He calls me "mama", says "hey!" to tell people "hi", and labels his favorite thing of all time- "fish" by saying "fffffsshhhh." What a blessing he has been to watch him grow and learn.Now for the not-so-good news. Thank God we celebrated his birthday on Saturday, because on his actual birthday on Sunday he became very sick very quickly. He was projective vomitting and became lethargic. We rushed him to the emergency room at St. Louis Children's and they conducted testing and diagnosed him with enterocolitis. He was still taking the full dose of Rifaximin, but it turns out that it was no longer working so well. They started him on IV Flagyl and we noticed improvement after several days.
We were reunited with his surgeon at St. Louis, Dr. Bernabe. It made me realize that there are advantages to being in St. Louis vs. Cincinnati: 1) much shorter drive, 2) our older boys and other family can travel up to visit 3) they more thoroughly know Landon's history and take enterocolitis more seriously, 4) pretty much everyone knows us from his "episode" a year ago today, 5) we are able to visit the doctors that saved Landon's life and express our gratitude and show off how well he is doing.
Although those are all important advantages, number 3 turned out to be the most important. Dr. Bernabe decided to do further testing to see why Landon is continuing to have such a poor outcome following his pull-thru in December. The first test was a lower GI study that was done on Wednesday. It didn't take the radiologist long to see that something was abnormal. Landon had a narrowing in the rectosigmoid region and into the descending and transverse colon, consistent with Hirschsprung's disease before ANY surgery is performed. Dr. Bernabe then came in and explained that although it is rare, sometimes following the pull-thru surgery an area of the colon doesn't receive sufficient blood flow and can actually become aganglionic. We have biopsies from both St. Louis and Cincinnati to confirm that good colon with ganglion cells was pulled through back in December, and so there are no questions about there possibly being a surgical error. So we proceeded with a biopsy, which was done yesterday morning. Dr. Bernabe went in and performed a full-thickenss biopsy under general anesthesia to confirm that a section of Landon's colon is aganglionic again. Landon did very well during the procedure and we were able to come home last night.
So what does this mean for Landon? I've created a diagram to better illustrate what I'm about to explain in hopes that maybe it will be a little less confusing.
Here is a colon/large intestine. The area circled in blue has already been removed (15 cm), with the area directly above pulled through and reconnected with Landon's rectum. So the area circled in green is actually stretched and is placed where the area in blue used to be. Fast forward to Wednesday, when we saw the results of the lower GI study. The area in green (another 7 cm) is now narrowed and is not allowing stool to pass. Once removed, Landon's entire descending colon and part of his transverese colon will be gone. This is no longer consistent with short-segment Hirschsprung's disease, resection to this extent occurs with long-segment disease.
Those are the facts. Now we get into the opinion of the surgeon. Dr. Bernabe feels that since the ascending colon receives much better blood flow, we may have the greatest chance at a successful surgery if she removes Landon's entire transverse colon and connects his ascending colon. That would leave approximately 25% of his colon in place. That part sounds okay. The downside is that she uses the Soave method. Everyone should do their research on the Duhamel, Soave, and Swenson methods and form their own educated opinion. My opinion is that the Soave method is inferior to the Swenson method and yields a higher complication rate of enterocolitis and re-do operations due to what is known as the "Soave cuff."
For that reason, I can't say that I'm comfortable doing the pull-thru in St. Louis. I do feel that St. Louis is better managing Landon's care and is being more thorough, so I asked about the possibility of just going up to Cincinnati for the re-do pull-thru (Swenson method) and then coming back for Dr. Bernabe to manage his care. Dr. Bernabe stated that she would be comfortable with that, and so that is one option on the table.Another option would be to return to another temporary colostomy. This would be a good option to keep Landon healthy for a while and off of antibiotics, and we would definitely do this in St. Louis. The disadvantages are that the colostomy was not easy to care for, and this would guarantee at least one more additional surgery to reverse it at a later date.
There are a few other options that we are not ready to consider (permanent colostomy, pull-thru with loop ileostomy). So basically what it comes down to is a decision to go back to a colostomy for a while to get Landon healthy and stay out of the hospital for long periods of time, or to go straight to a re-do pull-thru and keep trying to make this work. Both options have advantages and disadvantages that we are weighing. Right now we are deciding what to do, who is going to do it, where it is going to be done, and when it will be done.
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