|March 22, 2005 Our greatest concern with Shawn now is this condition, PROTEIN LOSING ENTEROPATHY AFTER FONTAN OPERATION - this condition was brought on by his last major open heart surgery (the Fontan) and is so hard to understand, much less expain, but I will try. Basically with the PLE, Shawn loses protein moleules from the blood serum, into the intestinal tract. This fluid then builds up in his stomach (ascites) which is why Shawn looks 9 months pregnant some of the time. Here is a link to an article that I have read and refer to a number of times.
|PROTEIN LOSING ENTEROPATHY AFTER FONTAN OPERATION
by Jack Rychik, MD C.H.O.P
|Shawn was first diagnosed, July 2003. After his first round of steroids, Shawn was in remission for about 13 months, until this last November. We once again started a series of high doses of steroids, which put his PLE back into remission again, which was awesome, we once again felt like we dodged a bullet. But it was within two months that little things made me ask Shawn's pediatrician to do blood work to check the protein levels, which did show that Shawn's protein levels had dropped - never question a mothers intuition. George and I were crushed. So we put Shawn back on his high protein - low fat diet, and Dr. Scott (Shawn's pediatric cardiologist) upped his Aldactone (medication, a dieuretic) and we are just watching him like a hawk. His blood work done 2 weeks later showed his protein levels were about the same, which is good that they aren't dropping extremely fast. So, we just take it one day at a time, if he should show any symptoms, like excessive swelling, which is most noticable in his eyelids first thing in the morning, then we will discuss trying steroids again, or other options.
This Friday is Shawn's sisters' birthday, HAPPY BIRTHDAY, SAMANTHA, so we will cook up something extra fun to do this weekend, and it is Easter, and we love Easter - we hope everyone has a great holiday!
|April 26, 2005 Shawn has been doing amazingly well with no symptoms of his PLE at all. He went in earlier this week to see his cardiologist, Scott Wellmann, who did blood work that showed his protein levels are staying the same, still low, but not dropping, which is great, and considering that he isn't showing any symptoms, we are continuing on, changing nothing. We'll see what tomorrow brings.
I have to mention that exactly one year ago, my littlest 'girlfriend' Olivia Destiny Marie Sanchez passed away, after fighting her battle with cardiomyapathy with an iron will. My world stopped for awhile a year ago. I know she now dances and sings with the angels, but I still miss seeing her dance and sing here.
|May 15, 2005 - Shawn continues to do incredibly well. He is complaining of muscle fatigue daily and there has been slight swelling in his eyelids - when shawn's PLE is acting up, he becomes extremely swollen, and we always see it first in his eyelids. i have to say that our family has been so touched in the past month. Shawn's school, most important, his kindergarten class, signed up and joined us for the heart run, over 330 people.|
|November 17, 2005. Shawn's PLE is still considered 'out' of remission, going on 10 months, but still shows no symptoms.|