For the Love of Ivey

Transition is a big moment for someone with disabilities. Transition to school, in school, and out of school. But medical transition for a medically complex patient with multiple specialists, is a massive transition. Even though Ivey has the Medically Complex Care Program at Children’s, the transition is vast. Passing the torch cohesively to the adult medical world is near nonexistent. Children’s is talking and prepping me, but the actual transitional move of Ivey’s medical care is all in my hands. She will no longer be under one umbrella with a single medical home with no one who knows her history. Depending on the body system, she will be dispersed across hospital campuses. The sprint to 21 is in motion with one to two office visits left with her Children’s team members. So many major decisions to make, new doctors to meet, protocols to be formed in the next few months, with everything to be in place and ready the day she turns 21. Twenty years ago, as overwhelming as it was in...

Today Ivey and I will head to Emory.  Specifically, we are heading to Emory's Department of Human Genetics.  We are going back to hopefully find answers to a question that has materialized in the past few months.   Ivey's inner circle is aware of changes that have occurred and the steps we have in front of us in a search for an answer, if there is an answer.   In Ivey's last sedated procedure(s), an ABR was conducted.  An ABR (Auditory Brainstem Response) tells us if her inner ear (cochlea) and the neural pathways for hearing are working.  Over Ivey's lifetime she has had several ABRs.  An ABR is the only accurate way we can test Ivey's hearing because of her limitations in communicating what she hears.  Where Ivey has consistently maintained a mild/moderate hearing loss, that has now shifted.  The latest ABR indicated that Ivey's hearing is now a moderate/severe hearing loss.  Her right ear having a moderate loss; her left ear...

Last night I got my girl bathed and dressed for bed.  Our usual nightly routine.  Then we began our other routine in prep for the morning hustle to get out the door for a 6 am arrival time at Day Surgery.  The routine is necessary.  We discuss what will happen to her once her surgery begins.  Who will be with her.  Possible things she might feel and hear.  I explain that they may not know what she is requesting through her attempts to sign or her sounds as she comes out of  anesthesia   and that she may not know where she is, but mom and dad will be close by, just waiting to get to her.  I reassure her that even though she will not know the people she is with during surgery, they care for her deeply and have her best interest at heart.  They will be as gentle as possible. And as always, this is the point where I cry.  I apologize to her for making decisions on her behalf, all based on the good intentions of doing what is b...