Googling My Way To Insanity

Since we went to the Stroke clinic on Tuesday, I've been spending entirely too much time googling medical terminologies.  The problem is, all the medical records we get sound like they are written in code.  I consider myself a relatively educated person so the fact that I can't get through a single sentence of Wesley's page long MRI report without having to look up at least one word seems ridiculous.  So to understand the medical reports, I either need a doctor with me interpreting each word (where as most doctors just briefly summarize) or I end up googling to satisfy my need to understand exactly what is going on with my son.  There are 3 main directions for my latest batch of googling.

1: I got copies of all of Wesley's imaging (x-rays, ultrasounds, and MRI) that was done while he was in the NICU.  Several of the reports note an "enlarged heart."  I know that there are some things the doctors talked about that I don't remember but I think I would have remembered them talking about an enlarged heart.  Turns out that this was probably just a side effect of other problems like his high blood pressure and respiratory distress.  Good that this is not as scary as it sounds.

2: On Monday the Stroke clinic decided to draw some of Wesley's blood to run some tests for clotting disorders that could have caused his stroke.  At the last minute, the doctor popped her head back in and said she was going to order one more test for "very-long chain fatty acids" in relation to peroxisomes.  She said that is was an unlikely diagnosis but she might as well test for it while they were doing the other tests.  I didn't think much of it until I looked it up.  Peroxisomal disorders include 4 different types, none of which have a cure and one of which results in a lifespan of about 1 year... sobering thought that they are testing for this.

3: I just requested a copy of the pathology on my placenta which I knew they performed but never heard any results about.  Turns out to have a few concerning items including aminocyte necrosis (which I didn't really find anything about when googling), hemosiderin (which forms after bleeding, which I did not have but Wesley did), early stem vessel thrombosis (clotting issues), lymphocytic deciduitis (didn't find out much), and most disturbingly chorangiomatosis.  Chirangiomatosis is rare condition that is associated with Hydrops Fetalis (which we think Wesley had).  Hydrops is often associated with Rh incompatability which occurs when a mother with a negative Rh factor develops antibodies against the blood of her baby with a positive Rh factor.  They give shots to prevent the mom from developing antibodies (which I've now received 4 of) and test for antibodies (which mine came back negative).  However, it seems all to suspicious that the placenta shows evidence that causes a disorder that Wesley had which is associated with Rh incompatibility.  I think it is curious enough to look into again.

So... I'm not sure that any of this googling has really gotten me anywhere except more anxious for answers and more nervous about Wesley's future and the possibility of severe complications in future pregnancies.


On a happier note, Wesley has been really smiley lately when he is playing.  It is so good to see him interacting.  I just can't help but smile when I see that adorable grin on his face.  We are so blessed to have him in our lives.  His physical therapist was really happy today with how strong his torso and neck are getting (YAY!).  No matter what else goes on or where he is "supposed to be" developmentally.  It is a miracle that he has come this far and he is continually moving forward.