We just got a call from Nurse "B", who is the study coordinator and basically our first stop for anything related to Emma's VUR, and she was calling about the final results of her DMSA scan. Perfection!
There are basically two different things that this scan looks for. One being if there is any kidney scarring/damage and the other being how hard both the kidneys are working. Sometimes in cases where children have reflux only on one side (like Emma), you would expect that one kidney may be working a little harder than the one on the side with the reflux. The second part of the test (how hard the kidneys are working) is measured on a scale of 0 - 100 where you actually want the results to be 50 - 50, meaning each kidney is doing exactly 50% of the work. Any numbers between 40 - 60 are still good, but Nurse "B" said that in her 15 years of working in pediatric urology, she has only ever seen one child with an actual 50 -50 rating and guess who that little peanut was...
Emma also showed absolutely no kidney scarring or damage, which was another relief to hear!! So we are finally back to normal and our next appointment (unless another UTI comes up :::knock on wood:::) isn't for 6 months when its just a small prick for a quick blood test. This should however make Emma nice and angry during her 12-month appointment with her regular pediatrician! Yikes! Maybe Daddy should take her to that appointment! To show you also how big of a nerd couple that we are, Wes and I have turned this VUR/study/antibiotics vs. placebo thing into a competition against all other parents ever involved! :) I mean come on...given Emma's results from her DMSA scan and her 50 - 50 score, I think we have a good chance too haha! Basically the doctors know that LIFE will often make it somewhat difficult to give the medicine every.single.day, so if we give Emma the medicine, 80% of the time, and get 80% of the medicine in her each time, we would be in the upper 95% percentile of parents in this study. Well that's simply not good enough for my perfectly functioning (at least kidney wise) baby peanut!! So our goal is to basically be the best parents ever known to this study!! :) I know...ridiculous. But as soon as we heard those statistics our competitive nature just came right out! So here is our system to make sure we hit 100% over the next two years (yeah right haha).
Another part of being involved in the study is that we will get a call every 2 months to let Johns Hopkins know about how Emma is doing. We will get asked a lot of questions about how often we gave her the medicine, how many times a week she poops (because constipation is such a big deal now) and many more. Ergo, the Poop & Medicine Tracker 2010!
I made a monthly calendar that hangs on our refrigerator (right next to Emma's art from daycare) that is a daily reminder of her medicine. It has a check box everyday so we can keep track of the days that we give her the medicine and a line for the ____ # of BMs. That's right. Poop tracker. I am all about data so when we get those phone calls every 2 months, they aren't going to know what to do with all the data they are going to get!! Once a week, we fill up the little syringes full of the medicine which makes it MUCH easier to just bring upstairs with her bottle of water (for her formula) for the next morning. Cuts down on a lot of the time!
For now, I think that is about it. There is hopefully more to come later on how I am trying to prepare Daddy for a week on his own with Weans (just finished typing up Emma's week long eating schedule). I am also sure that my first week-long business trip will do wonders for my back and forth feelings about being a working mom, so I am sure I will have a mother-related-meltdown shortly! Stay tuned!
No comments :
Post a Comment