for the moms following this trip...
friday we had a super duper long day at children's. A couple of lectures for my learning / training purposes, more imaging, then Md appnts with the colorectal team, and a trip to the pharmacy for supplies.
I did learn new and helpful things today. First, i've been using an ingredient in shea's "recipe" for a year and a half that can long term cause kidney problems.... I have been getting scripts for this...so I assumed the prescriber at home would know the risk... but anyway we've stopped that all together and have some new "ingredients" to work with. I was afraid that these changes wouldn't work as well because volumes and potency of ingredients were decreased, but with some new techniques and administration tools, as well as timeframe adjustments.... so far so good. We actually had more success than i was getting previously.
I've also learned, both boys are retaining way way more "abdominal contents" than I thought they were. I had thought our existing routines were pretty adequate at keeping their insides protected the way i needed to,.. but not the case. I feel some defeat that I wasn't caring for things properly.... but i feel relief that we now have the help we need and are on the track to correction.
An interesting side note... one of the boys has some quite interesting internal GI anatomy... let's just say an additional loop de loo that is not usually there... looks just like the loop on the viper at darien lake :). One of the benefits was that the docs were able to determine if this was a clockwise or counter clockwise loop to make sure treatments and procedures needed in the future are done properly. Also one of the boys has a "narrowing in an area that shouldn't be narrow" at 2 different locations that could be causing some of the troubles. Again this is an issue that i have brought up to other specialized doctors in the past with no guidance, this will be examined further this week, and addressed.
The weekend is used to start the new treatments that they prescribe for each child on your own, and the hope is that the scans on monday will look clean and ideal. If not they use the journals you have kept to then be able to modify the prescribed treatments. We had good success today. Also I did not think i was going to change the kind of kit we use, but after trialing this new style once, I immediately see that it works better for both boys.
Since today was pretty successful for us, we felt "safe" by noon time to head out of the hotel. We took "precautionary measures", but never needed to implement them! :) Shea and Simon got to hit the Cincinnati children's museum and the natural science museum.... free tickets compliments of the hospital.
During Friday's lecture, I entered the day very matter of fact, like a student ready to take notes and prepare for a lab and exam! I was very surprised about the emotions that flooded me as Dr Pena ( the founder of this program and world famous surgeon for anorectal defect repairs ) spoke at times not like a doctor, but like a sympathetic soul. Having someone who obviously cares about this issue that affects life so profoundly, and knowing everyone in the room was dealing with similar struggles...in a way that most can't identify with. Again... feeling like we found more of "our people".... took me off gaurd.
I feel like we have just started to peel back the layers as many many appnts, tests, and procedures are occurring in the next week while we are here. Prayers are appreciated on monday as simon will be sedated for a pelvic and lumbar MRI. The team here has found that many people who had imperforate anus repair in China in the same decade that simon did have a post operative defect that can contribute to continence problems, and at times tumors. The MRI is needed for general treatment and planning, but also to rule out this problem for simon.
Those are the main points since the last update... if you're still reading I hope it's helpful if you're considering a trip out for your own child... and thanks for keeping us here and dan and the girls at home in your prayers....