Aren't 10 Specialists Enough?

Well today has been fun....we narrowly avoided a trip to the ER last night with Ava. Her oxygen levels were low for a while and we almost went to the ER after a conversation with the doctor. But she rallied a little, and her O2 went up to an acceptable level. I was quite happy because 1) I hate going to the ER and 2) the doc warned me there was a nasty stomach bug going around the ER and all the kids were barfing. No thanks.

So off we went to the pediatrician, who is a wonderful man. he reminds me of my own pediatrician. Kind, gentle and very good with Ava. Ava loves going to see him. Go figure. He knows Ava and her illnesses well and always has good advice. He gave her an antibiotic and we were on our way. So I had a full day of breathing treatments, tube feeds and the like. Plus I had to gt some schoolwork done with her, or God forbid she'll be behind when she returns.

So, before I get to grumbling about CT standards for first graders, allow me to back up a little. You all know that Ava has a very rare craniofacial syndrome that has required her to have numerous surgeries, procedures and therapies. Her early days were very dark and her life hung in the balance for a while. While Pfeiffer syndrome is classified as a craniofacial disorder it affects pretty much every part of her. She has a trachestomy to breathe (which we hope to have removed someday), a feeding tube, since she didn't learn to eat until she was 3, a shunt in her brain to divert excess cerebral spinal fluid to her abdominal cavity, and hearing aids to compensate for her conductive hearing loss. Someday I'll go and count the number of surgeries shes had; I've lot track.

In addition to her regular pediatrician she has the following doctors in the following states (we live in CT) and we visit them at the following intervals:

Craniofacial Plastic surgeon: NY, 2x a year
Neurosurgeon: NY, At least once a year, and when she needs emergency surgery to fix her shunt
Ophthalmologist: NY, 3x a year
ENT: NY, 3 x a year
Airway Team: Cincinnati: once a year, at least
Audiologist: CT, once a year and when her hearing aids need fixin'
Orthodontist: NY, 2x a year
Dentisit: CT, 2x a year
Gastroenterologist: CT, 3x a year
Cardiologist, CT, once every other year

Just for fun we also started seeing a pulminologist and will be adding a neurologist and orthopedist to the rotation since I was starting to have about 10 minutes of free time a day. Stay tuned; perhaps you can see where I'm going with this.