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 the beginning, there was a team lining up at Children’s to take her, all
of her, and set goals to keep her alive. People meeting her and her unique diagnosis with no road map and helping me to plot her coarse. In all these years- there has never had another diagnosis like Ivey walk through Scottish Rite or anywhere that we know of. It has been so isolating and lonely navigating without a “group”- but Med Comp formed a few years ago and gave me a home-base to turn to for help. Ivey’s life is with us because they helped navigate to keep her alive, taught me to keep her alive, and knew when to look further to keep her alive.
Now- there is this amazing team who has traveled this road and has so much knowledge of a very unique diagnosis - but there is no team in the waiting. It is a vast dark drop-off. No matter my obsessive need for organization and preparation, it all feels so chaotic. Unknown. Uncertain. Unsafe. So alone. No Heather to call.
Meeting new specialists in the adult medical world has left me sitting in parking lots terrified. We are stepping back into the Hell in the hallway. One door closing- waiting for the other to open. Only fire is in the middle.
We left dental this morning knowing there will be one more visit and one more OR before Ivey leaves. The prep for transition - but still trying to find the place to transition a cranial facial patient with Ivey’s history. There’s not a place or certain person who fills her needs or the need of surgery. Dental is one prong of a three part system that has been one of Ivey’s most crucial needs at Children’s. The other two prongs are orthodontics and her cranial facial surgeon.
Years of cranial facial clinics are under our belts. They are key players in some of Ivey’s most challenging surgeries - trach, cleft lip/palate, cranial vault and the La Forte. Not your typical dental. Dental is somewhat the gate keeper to her cranial facial needs. 20 years with them. They look at her and truly see a face of beauty that others miss- - just how beautiful Ivey is, the fight to live despite the trauma her head and face had to endure for it. They know each scar and what each scar represents, what she endured to carry those scars. Scars are a thing of beauty.
Anywho- this special place of safety - Children’s - is slowly loosening its hold. I don’t think any parent of a medical complex child can ever possibly be ready. There is no adult Children’s. The adult medical world is not made for medically complex- not as a whole. Not one day in the past 20 years have I taken for granted our place in Children’s. It has all gone by so quickly. Too fast. We are beginning the free fall- There is so much to do in the next few months. 
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