Monday, March 10, 2014

It's been a long time...

Wow, I'm getting quite horrible at keeping this blog updated. BUT that usually means Lilliana is doing very well and unfortunately when I update this are not so hot.

We had a short little hospital stay about 2 weeks ago. I was away in Seattle visiting my adorable little nephew and came home to a SUPER Puffy girl :( Her face was all swollen, her belly was giant, and overall she was just super overloaded with fluid. A trip to the ER showed that her lungs were clear but she was definitely retaining fluid. There was a brief mention of a "side effect" that some Fontan children develop known as protein losing enteropathy (PLE). They thought that possible just being sick (with a cold/flu) might of just caused extra pressure within her lungs/heart and it caused some fluid retention. They took a stool sample before we were discharged to check for PLE.

Today we received the results.... signs are pointing to PLE. They want to get another blood sample to check her albumin (will be off if PLE) and another stool sample (if there is protein in her stool it shows PLE). There is still hope that it was all caused from being sick and that is what I'm PRAYING for and any prayers you can send our way would be greatly appreciated.

What is Protein-Losing Enteropathy?

As the number of survivors after the Fontan operation have increased, an unusual and inexplicable ailment called "protein-losing enteropathy" or PLE, has been noted to occur in some children within a few weeks after the Fontan operation, or years later, in children who are otherwise doing well from a cardiovascular standpoint.

Symptoms of this ailment may include swelling of the abdomen, shin and ankle area, and a change in bowel habits with the development of diarrhea and abdominal discomfort.
Children with PLE lose protein molecules from the blood serum into the intestinal tract. Over time, the concentration of serum protein in the blood stream can be significantly depleted. One consequence of a low concentration of serum protein is the inability to maintain fluid within the vascular space.

Low serum protein levels can result in the accumulation of fluid outside of the normal vascular spaces and in the abdomen, ankles and shins. An abdominal fluid collection is called "ascites", and fluid in other tissues is generally referred to as "edema."

The loss of protein into the stool results in a change in bowel habits with the development of diarrhea and abdominal discomfort. Edema of the intestinal walls may result in poor absorption of food which promotes further worsening of the diarrhea. Another consequence of intestinal protein loss is the depletion of serum immunoglobulins which fight off infection. Patients with severe PLE are therefore at risk for serious infections at a time when the body is already weakened by other symptoms related to edema and ascites.