Battles against terminal illness, anxiety, and life!

It’s believed that chronic sinusitis is something that Braden is going to have to deal with for the long haul.  It’s something that just comes with the territory. It is believed that his lungs will deteriorate with time.  However, his shortness of breath is believed to be a cardiac issue.  So, we are waiting to get into the pediatric cardiologist.  Not what we had hoped to hear.

Regardless, we are going to try to stay two steps ahead of Braden’s lungs.  We are starting physiotherapy of the lungs.  This involves using a large vibrating device called a percussor.  The device helps clear the lungs.  This is especially important during the school year when Braden catches nearly every cold and nasty virus he comes into contact with.  This will help make his coughing productive.  Later we may work on breathing exercises.  For now, we will also add an additional inhaler.

Braden’s IgA (immunoglobulin A) is deficient. So, just what the heck is IgA?  Oh, no time to figure out that mumbo jumbo?  It’s basically an antibody (the ninja warriors protecting against  invading armies) that’s found in the gastrointestinal tract and in the respiratory system.  Other places too, but those are the primary locations.  It’s thought that this deficiency is partly to blame for his chronic constipation.

When Braden was just a few weeks old he was tested for Hirschsprung’s Disease.  He tested negative.  This is important.  What’s HD?  “Normally, muscles in the intestine push stool to the anus, where stool leaves the body. Special nerve cells in the intestine, called ganglion cells, make the muscles push. A person with HD does not have these nerve cells in the last part of the large intestine. In a person with HD, the healthy muscles of the intestine push the stool until it reaches the part without the nerve cells. At this point, the stool stops moving. New stool then begins to stack up behind it.” (From here.)  The gastro believes that while Braden is not missing ganglion cells, they are underperforming.  He strongly believes that this is related to his Ataxia-Telangiectasia (A-T.)

So, we are going to do a test to see just how Braden’s digestive tract is working.  He struggles with severe constipation causing anal fissures.  Ouch.  It gets to the point where there is a great deal of blood inside and outside his stool.  This has been going on for far too long, and we’ve sought help in many directions.  We are thankful for finally working towards helping our little guy become umm…regular.

As far as his GERD (or severe acid reflux) goes, we are going to sit tight.  We’ll see if we can get things moving well enough out one end if it will help a little with coming out the other.

We get tomorrow off, which means I get to go and pick up a new set of prescriptions.  Hey, I’m seriously considering typing up a dosing schedule to frame and put up on the wall.  Yowza!  Thursday we head back down for Urology.

More then!

Becky- one very tired mom.


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