Avery is doing good, mom not so much!

I recently posted about Avery's upcoming procedures (bronchoscopy, tubes in ear, tonsils and adenoids removed.) I did not get the information I was hoping for and have been pretty frustrated ever since. Avery did not need tonsils or adenoids removed. She did have tubes put in her ears and granular tissue removed from her trachea where the end of her trach is rubbing. After the procedure the Dr. came and told me everything. I asked since her tonsils and adenoids didn't need to be removed what is causing the obstructive apnea. He said it looked like her tongue is falling back while she sleeps. Okay, so what can we do about it. He says there is a surgery that can be done where they put a screw at the bottom of her chin and tack down her tongue, this can only be done after her big teeth have grown in. WHAT!!!! Really that's my option, keep her trach until she is 7-8 years old. Dr. said I should be lucky that Avery has a good airway with her trach. Easy for this man to say since he doesn't live with a child that is trached and has no idea the work that goes into it. Okay!  Okay!  You can probably hear my frustration. I have spent many hours researching and educating myself on Pediatric sleep apnea. In hopes I can go to our next appt. and have something to back up my opinion on Avery's situation. I am in the process of a second opinion as well, the more information the better.

Avery's upcoming surgery

Took Avery to urgent care this morning due to low grade fever, cloudy urine and congestion. Came home with Urinary Trach Infection, Respiratory Infection and Cipro. Just another day!!!!!!!

Avery is scheduled for a Bronchoscopy on February 12th to see where her Obstructive sleep apnea is stemming from. Since she will be under anesthesia it would be nice if the Doctor could take care of the problem after the bronchoscopy. I sent an e-mail to her ENT and he got back to me and said he would do that. So she is scheduled for a possible adnoidectomy and tonsillectomy as well. If those need to be removed then she will be in the hospital for a few days. This will mean we are that much closer to getting her trach out.Yay!!!


Video of Avery taking a bath and showing me how she can wash herself.

Avery getting around the house