Hope

After our visit with the neurologist last week, Sophie being sent home from school again this week, and several conversations with my mom, we decided to self-refer to a Pediatric Pulmonologist.  There are only 12 in the Chicagoland area, and I believe we called the right one at the right time because we got in today.  We knew going in that the visit would be three hours long and Sophie was a rock star.

The process was obviously long, but the abbreviated version is: breathing tests, asthma medicine, rest, repeat of breathing tests, examination and consultation with the nurse practitioner, and then another examination and consultation with the doctor.

The results were that they are a great fit for us!  The doctor said we've been seeing all the right specialists (people he respects and works with) but that it seems no one has been steering the ship--which is exactly how I've been feeling.  Their goal is to communicate with all the doctors we've seen in the past year (sleep specialist, ENT, neurologist, and pediatricians) to talk about what they're assessments were, what they took from their tests, and what the plan of care should be.  They are also going to review the MRI, the Sleep Study results, and have ordered a chest x-ray (in fact they were astounded this had not ever been done).

The medical results were that she definitely has asthma, or as the doctor said, "her lungs really liked the asthma medication".  She had solid improvement in the breathing tests after the medication.  They don't however believe her chronic cough is from the asthma (because it was not improved by the medication), they think she may still be dealing with this sinusitis she was diagnosed with by the sleep specialist and are going to work to cure that.  We're switching asthma meds (again) to Advair which has both the bronciodilator and the steroid in one treatment.

Now we give them a few weeks to review all her tests, communicate with the previous specialists she's seen, get the chest x-ray, and to evaluate how she is on the Advair.  We go back in the end of June.  I really am thrilled to have someone willing to take the lead, and even happier that they are glad to do it.  The doctor actually said, "We are very experienced in working with complicated chronically ill patients".  This is just what we've needed.  Someone who won't look at just one part of this puzzle, but the whole picture and help us to understand it that way as well.

Now, on to Advair and renewed hope that this is a journey we can navigate.