This may bore most readers but I'm going to share the process of this week long bootcamp for those who come across this blog and have a child with Spina Bifida.
Today was what will be the simplest day because it did not involve bringing Mason. I attended a lecture that is a general overview of how the bowel works, basic enema and medication based solutions for bowel problems, surgical interventions that are possible depending on circumstance, etc. They also demonstrate the foley balloon enema (how it's put together, how you fill and prepare it to use with your child, etc). That was interesting because we've not used that setup, we use a cone enema. I'm hopeful that this will be a good option for Mason.
They talked about the variety of things that they look at and coordinate when planning a bowel program for an individual (including looking at the colon's size, function, nerves, and more). They talked about products to mix for a solution, about fiber supplements and laxatives, and more.
The group was generic to a degree because in the room were a variety of people there for different underlying issues. That meant it was not as helpful to me personally, in that most of the situations they described won't apply to Mason. He has no sensation and won't be able to eventually learn to empty his bowels on a timed routine (without an enema). As far as we know today, he has no anatomical abnormalities that could be surgically corrected (the contrast enema tomorrow will detail that for us, but we have no reason to suspect abnormalities). We have already been doing enemas and laxatives for 2 years so we're in familiar territory.
They opened up the room for questions and I was able to ask specifics. You could see the confusion on some faces as the nurse demonstrated and described using the foley enema. The nurse wasn't specific enough in some ways. I was able to ask specific questions that clarified the process because I already knew what to ask, having enema experience. For example, in the sample pictures (with a doll) in our binder they show a child laying on their belly and knees during the fluid going in process. That's pretty awkward. So I asked about alternatives like laying on their side or our current setup with sitting on the toilet during the entire process. It turns out both options are valid, and from experience with Mason I know they are more comfortable for him as well as easier for him to play or do an activity while waiting through the process.
One poor woman asked, shell shocked, if they would need to do an enema every single night once they head home after this week. She was under the impression that after this week their child's issue would be solved. Yes, yes you will. Yes, it will change your family's routine. Yes, it's overwhelming at first. But you'll find a new normal.
Don't get me wrong, I appreciate the nurses and doctors we'll be working with. I know they have some experience that will hopefully help us improve what we are already doing (especially the alternative liquid mixes to put in that may stimulate Mason's colon to do some of the work to get poop out). However, the nurse demonstrating the foley enema setup was young (early 20s is my guess) and when asked by a mom if this balloon enema is something a child can eventually learn to do on their own she was adamant that it wasn't possible. The woman asking has an 11 year old. If you know me in real life you know I'm not shy so I spoke up. I told the mom that the nurse was wrong, that people CAN and do learn to use a balloon enema setup in some form to do their own enemas, because I'm part of many FB groups related to spina bifida and read their stories and chat with them. Can a young child learn to do it? Probably not. But an older child, teen, or adult? Yep. Like anything, it would take practice and finding a setup that works for them (probably one that includes doing everything on the toilet like our setup instead of transferring from the floor).
Sometimes I get so frustrated at how people limit others without even letting them try something new. No, they will never learn to do something independently if you never let them try. Sigh. Hopefully that nurse will learn as she continues with her career that many things that seem difficult are in fact possible.
Anyway, that was the gist of the evening. Tomorrow Mason has a contrast enema (dye goes in, x-rays are taken to map out his colon, etc) and we meet with the doctor for a plan specific to Mason. It should be interesting!