We continued to wait for the Diazoxide to fully kick in; when on day 27 we start to notice that George seemed to start struggling to breathe. We had already spent so much time with him, we knew his breathing patterns, his sleep schedule, and so on. Rich and I tried to make our situation as normal as we possibly could and asked nurses to respect our space and time with George. We didn’t get more than 30 minutes alone with him without someone coming in to check something.

So back to the breathing, George was placed back on CPAP that same day and he had an x-ray done that showed that his lungs were retaining fluid. Now, what I’m about to tell you MAY surprise you, but it certainly didn’t surprise us. George was immediately taken off of Diazoxide because one of the rarest side effects is pulmonary hypertension and fluid retention. Pulmonary hypertension occurs when the right side of the heart starts to work too hard.  On day 28, they initiated another diuretic that was supposed to help with the fluid retention. They also started two different antibiotics for two days just to ensure that this wasn’t a viral infection. During all of this, they drew blood to see if in fact it was an infection. All the tests came back normal and George didn’t have an infection; however an echo confirmed that his right side of the heart was enlarged and he did have pulmonary hypertension. On day 31, it was confirmed that George was the 13th reported case in the world to have ever experienced pulmonary hypertension due to the Diazoxide. 

Rich and I looked at each other thinking, “TYPICAL GEORGE!!”  If we hear one more time, “This is really rare” or “I’ve never seen anything like this before”, I think we would’ve snapped at someone.

P.S: In the midst of all of this, we celebrated George’s 1st month birthday!