Sleep was scarce last night. Concern for my girl and a behind-the-scenes thing {cat xrays/surgery??} had me up. I tossed and turned and finally retreated to the sofa.
I couldn't turn off my brain. Mostly, because of frustration with Emerson's medical care. I've mentioned my challenges diagnosing this and now, unfortunately, I find myself on similar ground with Emerson. Having the nation's top-ranked pediatric hospital and doctors in my backyard is truly a blessing and I'm grateful, but that experience and expertise doesn't always mean 100% satisfaction along the way and I need to vent.
Doctors work their asses off. There's no question. They do amazing things and treat thousands of families. Herein lies my problem. Miss Pippy's case isn't like the 100 other kids who march into ENT or Allergists' offices. Hers is different. So, while running the "checklist" for most kids probably works. It hasn't for us. And our mama bear/papa bear intuition has known all along it wouldn't. So a $15,000 out-patient adenoidectomy {shocking, no?} and the risk of general anesthesia and days off work and school was a waste, really. And I knew it would be. I knew it. My uncle knew it, too. He was my 2nd ENT opinion and his recommendation: wait. But, my grand plan was to have this thing done and gone by summer and the acquired habits beat by 1st grade. So, I fought the urge and went ahead with our treating Physician's advice. After all, he's no slouch.
{Chief Physician, Otolaryngology // Director, Pediatric Otolaryngology Fellowship Program // Professor of Otorhinolaryngology: Head and Neck Surgery, University of Pennsylvania}
But even the best can't know everything. And I wouldn't expect that. What I would expect, however, is a thorough review of my child's records and a careful assessment of past treatments,which, I have made certain are up-to-date and inclusive of out-of-network care {Allergist/Labs/Tests}. A large piece of my frustration also has to do with timing and availability of appointments. No. I'm not waiting another 30 days to see you and talk next steps. We're 30 days away from ONE YEAR of sinus mess and THREE YEARS of undiagnosed nail disease. It's time for aggressive treatments and testing and dialogue.
So, I did what any frustrated, bewildered parent would do, and that's turn to the Web. It's a slippery slope, researching on your own. There's just SOOOO much out there. But my research took me to two outstanding sites dedicated to Immunology Disease/Disorders and it was through my research I found a kernel of hope in an easy test we might try. Nothing more invasive than a Q-tip and a swab. Fine, Mr. ENT, you can't see us for 30 days, but my Pediatrician can. I made an appointment the next day, took my web print-out with me and said, I want to test for this.
Dr. - "I see you have an appt with ENTon 5/17, I want to email him and get his thoughts." Me - "fine. But regardless of what he says, I want to test her." I was already on edge that not one physician over the course of the year thought to mention the idea of a staph infection which pops up pretty quickly when you google "causes of recurrent sinusitis resistant to Antibiotics". Why am I the only one suggesting this? It's a hell of a lot cheaper than surgery. Why Dr. ENT when I phoned you two days before surgery and asked one more time ~ isn't there anything else we can do or try~ was I told no?
And then, my annoyance hit a high this morning when upon receiving the positive test results I was told "let's do another round of antibiotics". WHAT?!? Are you joking? Have you checked her file? We've done more antibiotics over the last year than I can count. No. I'm not doing more of the same. Nurse - "Well, the key is you have to run a course of meds longer than 10-days". WHAT?!? Are you joking? We just did a 20-day script in March, which was directly on the heels of a 10-day course and THEN we just did another 10-day script after surgery. No. I"m not doing it. Let's do something else. Nurse ~ "like what?". Well, how the hell should I know?!!?
I won't bore you with more of the conversation which only got worse.
I will bore you with this. It's my focus in life to give my daughter the ability to breathe freely, without mess.
And my Doctors had just better get. on. board.
