Thursday, April 23, 2015

The Mystery Remains

I broke one of my cardinal rules when it comes to the relationship I have with doctors.  I never take what they say at face value.  I always ask for the report and then confirm their results myself from the exact report notes and even additional researching I do on my own.

When we got the AVM news from the Cardiologist, I kept forgetting to get a hard copy of the report.  This week, Sam had his first visit with our new Pulmonologist.  In preparation for that, I got a hard copy of the Cardiology reports.

Our last visit with the pulmonologist and Shelbie wasn't the best visit ever and I wasn't sure it was going to be a good fit.  This visit was much better.  He had obviously done some extra homework about Dyskeratosis Congenita.  I feel like he will be a great doctor to communicate with, he did let me talk this time which was good.  Not a long, warm fuzzy talk; I learned I needed to be more succinct with him.  It worked out great.

Anyways, the Cardiac MRI didn't get a good look at Sam's lungs.  It didn't cover his lungs at all actually!  The AVM's were seen right around Sam's heart.  He has branching occurring in the veins right around the left chamber.  Though it is affecting his heart and lungs in some ways, the doctor didn't think it could account for the other symptoms like the wheezing in his lungs.

We have no way of accounting for the wheezing Sam is experience.  It showed up gradually and nothing accounts for the deterioration.  Even though he doesn't have Asthma, the doc is going to treat him as such with inhalers and such to see if it will give Sam a little more air.

The pulmonologist wanted to get CT scans on both kids with contrast to see what is happening with the veins in kids' lungs.  I hate to put them through more radiation but we also need to get to the bottom of this since they are having breathing issues.  Man, this is so complicated.

For today, we are sitting in the hospital for IVIG. It was a rough morning!  I can't remember the last time it was this rough right off the bat.  Things settled down mid morning and then I had to take off for an eye doctor appointment.  I have a blocked and infected duct in my eye.  Joy. So, we are kind of hobbling along this week.  What else is new?


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