PHA or not?

We came home on a Tuesday night and Chase was still eating well.  The next day we went to the PCP for a weight check.  He had finally gained an ounce, but more importantly this was the first day he wasn't losing weight.  He was nursing every 1.5 to 2 hours around the clock and having about 20 stools per day.  The cough continued and the mucus in his chest and nose made made it hard for him to breathe.  He continued to sleep for about 20 out of 24 hours.  On Thursday the PCP called me at home to talk about his condition.  She wasn't happy that we had been discharged and had been sorting through all of his discharge paperwork.  She asked me again if anyone had given me a diagnosis and I told her no.  Then she asked "they never told you he had pseudohypoaldosteronism?"  I said pseudo what?  She then began to spell it to me...I remember digging for a pen and writing what seemed like every letter in the alphabet as she spelled it out loud.  She told me we were going back to the hospital clinic the following week to meet with the nephrologist.  I immediately started searching the internet about PHA and wow...this was it - this was what was wrong with Chase.  Why hadn't anyone mentioned this to us?  Why didn't we know sooner and why did we have to wait a whole week to talk to the nephrologist about it? 

We went to the appointment an were suprised when he told us he wanted to follow Chase closely for the next few weeks but he did not believe Chase had PHA.  A couple of days after that visit his PCP called me back and said she was sending us to another nephrologist about 3 hours from home at another children's hospital.  When we got there we met a nephrologist who told us he knew the nephrologist that had been following Chase because he had studied under him in medical school.  He said "if he said Chase doesn't have PHA, then he doesn't".  We really didn't know what to think other than we had wasted 6 hours of driving time, a whole day at the hospital and put Chase through more blood work and ultrasounds.  So we returned home with our little Angel and I done the best I could to keep him hydrated. 

One of Chase's first smiles at about 9 weeks old.