Not Where We Where Hoping to be……

We had a standard follow up appointment with Pedi. Surgery today.  We talked about her vomiting.  She decreased her calories again.  The poor thing has gained another 3/4 pound in one week.  We talked about options for her poor GI track.   Mostly options for the future.

Then as we were packing up to go home, Bella decided to have another episode.  She has been having these more and more often.  She desats and we turn up her oxygen.  Eventually, we turned down her O2.  But the trend has been disturbing.  She has gone from being on room air to being on 2 liters of oxygen about all the time.  Well, today she was requiring 4 liters to maintain sats in the low 90s.  Instead of going home, I decided we would go upstairs to the Special Needs Clinic and visit her doctor.  Poor Bell.  Long and short of it, Dr. Louis, her nurse, the EMT, the paramedic, the home health nurse, and I escorted Bella to the ER where we ran more tests and were then admitted to our home away from home, the PCU.  We were once again greeted with open arms.  I love the people here.  They are so kind to our sweet girl.

I’m hoping we can figure this out.  It’s not what I had planned for my weekend, but I’m so hoping that we can get to the bottom of this.  Is it her heart? Her pulmonary hypertension?  Or something new and fun that I know nothing about?   Here’s hoping for a quick and informative stay!