Start to a new year....

January 2016 – March 2016

January was a busy month of appts.  We started to notice a weird honking noise when Landrie was running (see video below).  The winter months had been rough with sicknesses already and the chronic cough and congestion has not improved.  She was also having episodes of respiratory distress for no apparent reason.  I had made an appt with Pulmonary doctor a few months ago but took until January to get in to see him.  He watched the videos I had taken of Landrie and he said it sounded like her trachea was still collapsing.  He could also hear some wheezing when he listened to her lungs with a stethoscope.  He recommended putting her under and doing a flexible bronchoscopy and lung wash.  He sent a note to her ENT to let them know and they decided that they wanted to be involved in the scope also and they decided to make it a triple scope….flexible and rigid bronchoscopy and endoscopy and they would remove her adenoids if they were swelled.  We also had an appt with Genetics to see if we could find a genetic disorder causing her issues…especially the unexplained autonomic nervous system issues.  Despite her issues, she did not meet certain markers that the insurance company would cover the tests and they are expensive.  So we passed on doing any testing at this time.  If anything comes up later, we will revisit.  I started a new job with a company I had worked at a few years prior.  It was a good change for me and they are very understanding about my daughters health issues.  At the end of the month, Landrie turned 18 months old and hit the 7 percentile for weight….slowly increasing.  Which is funny, because she eats a ton now….the girl loves food. 

We weaned Landrie off the Erythromycin and she was doing great off of it…no reoccurrence of gastroparesis.  Her GI doctor said we could start to wean her off the Nexium.  No meds for first time in 15 months….

She had a bad sickness in February that got her admitted overnight for observation.  Her breathing was crappy and oxygen levels were low.  Thankfully, she bounced back quickly and we waited for her scopes in March.