So, I decided it was time for a more medical-type update of the nitty gritty of our trip to Cincinnati Children's. I will take a moment now to warn you that you may not want to read this while eating a snack and if you are really faint of heart, you may just want to skip this entry. I honestly have kept it pretty basic, but I know that it is still dealing with a icky topic--it's the colo-rectal center after all. For those of you who may not continue, just suffice it to say that we are accomplishing many of our goals in coming here. I think the surgeon described it really well when he opened his lecture Friday morning. He started with a picture on the screen of a boy who had had heart surgery. A certain hospital was advertising their cardio-vascular surgery department, and placed this picture in the New York Times. He explained that the hospital was very proud of their work--and very rightfully so, of course! But that they (the surgeons at Cincy's Colo-rectal Center) are very proud of their work, too, but the New York Times would never accept an picture of their work as an advertisement. It is just a subject that people prefer not to think about or talk about--and definitely not look at advertisements for, but that it is a very important part of life.
Thursday morning Beckett had another Full Thickness biopsy of his colon done. He had this surgical procedure done back in March as well. The surgeon takes a small piece of his colon and stitches it back up. This biopsy was to re-test for Hirschsprung's Disease (an absence of the nerves that push food through the colon) and test for Cystic Fibrosis Metabolic Syndrome. His last FT biopsy was not-conclusive of Hirschsprung's Disease, however, it did show a marked immaturity of the nerve cells needed for pushing food through the colon. So basically, according to that biopsy, he had the nerves needed, but they just are not as mature and productive as we need them to be. We should hear the results for the Hirschsprung's test in the next day or so, but the results for Cystic Fibrosis Metabolic Syndrome will not be back until later. Beckett was quite a little trooper (as always) for the surgical procedure, and we were headed back to the hotel early in the afternoon. He had a nice dose of IV pain meds, so he took a wonderful, much-needed nap with Daddy that day.
Friday morning began with a lecture by one of the lead doctors of the Colo-Rectal Center. It was very informative and helpful, and we learned more than many people will ever have to learn about--well, poop. Constipation can range from mild where the right diet and the occasional dose of Miralax are all that is needed to severe where bowel movements do not occur without intervention. During the lecture, a child-life specialist took care of the children, and I think Beckett really enjoyed watching the other (older) children play. For more information on the Colo-Rectal Center and Bowel Management Program, click here. We were then sent to another campus of Children's to have a contrast enema done. This gives the surgeons a good look at his colon and exactly what is going on in there. Our doctor said that his contrast enema did not look like a "Hirschsprung's colon," but only the biopsy will really tell us for sure. Then we headed back to the main campus hospital and waited for our next appointment with the doctor. At this time, we discuss the plan for keeping Beckett's colon "clean." He prescribed an amount of laxatives to start with. Then, each day, Beckett gets an x-ray done of his colon to tell if it is getting cleaned out or not. The laxatives are then adjusted accordingly. The goal is that at the end of the week, he will be on the perfect dose of laxatives--not too strong and not too weak--to keep his colon clean and avoid blockages and more infections, etc. The doctor expressed to us that there is no known side effect to laxatives. It is the only medicine he knows of that does not have a scary side effect. Many people will argue that the laxatives could cause the child to become "laxative dependent" but, and he stresses, "these children are already laxative dependent." In addition to the laxatives, we have also been doing something more aggressive then enemas called irrigations. It is as bad as it sounds, but I will not get into it any further here. This is done typically in Hirschsprung's patients or patients with bowel "stasis" to get the colon as clean as possible to prevent or fight infection called enterocolitis, and more specifically, c.diff. Because of Beckett's recurrent c.diff, they thought this was an important step for him. It does seem to relieve him when it is all said and done, but it is really quite miserable for all of us.
At the end of our appointment on Friday, we had been at the hospital for lectures, radiology, and appointments for 10 hours. It was a long day! Waiting on that many appointments to line up is not always easy with a one-year-old, but Beckett did pretty well. He was definitely relieved when we got back to the hotel, and he was able to have a little freedom to crawl. When we put him down on the floor, he stretched his arms out and front of him and his legs behind him, and spread flat out on his tummy on the wonderfully clean hotel floor (ick...) It was pretty cute to see that he could sense the relief of the end of the day.
Over the weekend, we began to feed Beckett some pureed foods. He started with just a few bites of pears, but has increased his intake each day. Of course, as his pureed food intake increases, his formula intake decreases. He is just not able to fit as much food in his little tummy as we would like. We are hopeful that his system can really get moving and he will be able to eat some while also still taking his formula.
Today's x-ray showed that his colon was fairly cleaned out. Yay! We are on the right track! The laxatives and irrigations seem to have done the trick! We will return in the morning for another x-ray followed by a progress report with our nurse. We came here in order to get the kid to have bowel movements, and I am certain we with the right medicines, we will be successful. At noon, we have an appointment with the motility specialist here. The Colo-Rectal center works on, well, the colon end of things. This motility specialist will work with the upper all the way through. Because his stomach also moves slowly, we felt it was important to see the motility doctor as well. Beckett is not just a colo-rectal kiddo...he needs support for his whole little system.
All in all, I think we are very happy with our trip here. God is working in huge ways. And I know that regardless of any new diagnosis, we will have a new plan to keep our little man's colon healthy, and that will be a good thing! That is our goal--to manage his bowels and help him to be healthy! And we will know that the best of the best have looked at our sweet boy. We may not be able to "cure" this issue--the surgeons here are the first to say that--but we can manage it.
Thank you all for the prayers throughout our trip and the entire process leading up to us getting here. We are so thankful to have friends--those we have known for years and those we have never met--to lift our little boy up in prayer. Thank you. Please continue to pray for all of the pathologists, surgeons, and GI doctors working to figure out the best plan for this little guy. Please pray for healing for Beckett, rest for his parents, and courage for his big brother.
I promise the next post will be a lot more fun with pictures of some of the cool (literally) things we have found to do here.
