IR move

And just like that an initial video telemed for transitioning one major component of Ivey to Emory ended with her next procedure to happen there. I thought the telemed was a consult, a plan, a schedule to see her first. Nope, with the click of a button, Ivey's next procedure is at Emory St. Joseph's.

Well, I didn't see that coming.

I fought the urge to say NO! Wait.... wait... wait... not yet. Not next week. I'm not ready.

So two things are going on simultaneously. A medical complex parent will get the struggle of the two opposing forces. A medical need was solved; on the other hand, I'm scared out of my mind to leave Children's Healthcare of Atlanta.

In the beginning we didn’t want to be there. And we lived there often for days, weeks, or months at a time. In the middle, it never occurred to us years would go by so fast, that one day we would leave. The hardest, also in the middle, it was uncertain her future, how would she leave? At 18, we saw the end of the tunnel nearing. Now, we are preparing to jump… to start all over.

This time I know her.

Unless I’m miscounting off the top of my head, there’s 16 specialist. I’m transitioning every history, medical need, medication, equipment, line size, who writes orders/scripts, and procedures by April. Come April 26th, the new plan and team(s) must be in place. I’m scared. I’m transferring from concrete stability to quicksand. Certainty to unknown.

Unknown in Ivey’s world has its own level of hell. Not knowing can be liberating. Don’t tell me she can’t do something- it’s unknown, there is potential.

Unknown also leaves much room for error. Getting through the unknown to the other side comes with hidden shadows in dark corners. Most often it ends with us bruised and battered but in a better place.

Still, Ivey is going to places that do not know her- all of her. They don't know just how resilient, strong, and stubborn she is. They don't know how hard she has fought to be here. She is going to people who do not know her communication, strengths, quirks. They do not know me - our family - how hard some days have been.

It’s not just the specialists, it’s their nurses, PAs, and NPs. The techs. The receptionists. The person who knows my voice on the phone and responds quickly because I’m "Ivey’s mom". The person fielding her my chart reading the message sent on Saturday night in hopes it is read first thing Monday morning. The phone ringing at 8:01 a because the message was read. The nurse that reads Ivey’s name and pushes for urgency before ever stepping into a room.

It’s the surgeon that sees her name on “the” board and stops in to check on her even though she isn’t his patient that day. It’s the surgeon who stays past midnight while she is rushed into emergency surgery should they need him. He's been the one needed in an extreme emergency before - so he waits. It’s the nurse who stays past her shift to hold my hand so I do not wait alone, past midnight. It's the intake nurse for pre-anesthesia telling me the day she first met Ivey...after running to her when she coded. We were in another room making hard decisions with a surgeon, decisions no parent wants to make.

It's the sweet cleaning person who sees us in the halls of Scottish Rite and walks us to the restroom. The one most people don’t know about on the first floor. It’s most often empty, and it has an adult changing table. She doesn’t want Ivey changed in the public restroom exposed on the table. She always holds the door.

It's Kimi. The person who became my friend.

It's every person that has taught me how to keep her alive.

There it is. This is the place that kept her alive while I was learning. There’s the fear- can I do this without them? Can we navigate the adult side of medical care? The weight has become heavy again with that buried thought.

It’s the tricks, the machines, the hope. It's her story that has soaked into the walls of a hospital. Our memories that are so different than the ones soaked into the walls of our home. They are raw memories.

It’s Miss Norma's voice - Happy, southern, grandmotherish on the phone. I’ve never met her in person, but I would recognize her voice in a crowded room.

It’s the IR team that is loud, literally, they are all loud. They turn a short procedure into a party - at least that's what it sounds like from my side of the door. They play Ivey’s music over the speakers while changing out her button. Our problem solver Brie Cummings. It's Shona Belle Richards.

We are stepping into the hallway. It’s hell in the hallway. I am scared.

Back to the telemed. Simultaneously two things collided.

1. The call was less than 10 minutes. Radiologist said, “When is the next change?” Me: Ivey is in 4 month rotation. Next change can be next week. He said, “Let’s get her in next week.” Scheduling called yesterday at 5pm.

And just like that Ivey will be at St. Joseph’s next week across the street from our home, Scottish Rite. It was so easy. I have worried so much about this one thing. It’s literally her life line: water, food, meds. Her button. When your kiddo doesn’t take anything orally, or rather, cannot physically take anything orally, a button and tubes to their stomach is kind of a really big deal. I am relieved. The schedulers were so sweet- and patient with my million questions. But I am still panicked.

2. My heart is breaking. I’m anxious. I’m terrified to take her anywhere else.

Why? I know the parking deck, the elevator, check-in, registration, where to sit, how much time we have to cruise the gift shop, get a coffee, the wait.

Because small things go terribly wrong sometimes and we need to be in the right place with the right people. Ivey's people.

Mainly, I thought Ivey and I would say good-bye to her IR team. We could tell them - the whole team- how much we love them, how grateful we are, how thankful we are. They are a constant in Ivey's world. Security. And in my world too..... I hand Ivey over and sit for a moment waiting and smile at the music from behind a closed door. There's safety in that familiar tiny waiting area.

I am not ready to jump, not yet. I want to squeeze out every second with the people who are our people, a span of nearly 20 years. A collection of memories of Ivey's childhood and Life. Life with a captal "L", not lower case. I need to squeeze Brie and Shona - they have made my girl’s life possible and fun in some really crappy situations. I need to give the IR receptionist a hard time. She lets Matt off the hook when filling out papers.... because he's dad. I am not ready to let go, not yet.

But the transition has started. No matter how much I do not want this, it is happening. Once again, I have no control. I will put her in strangers hands and let go of security. Not just Ivey's security, my own security in being her mom -

This is a first step in a complex process. I’ve got- what- about 15 more to go. Neurology is our next big beast. Stay tuned.

That’s all I have. Twenty years ago we stepped into a place I did not want to be. Met people I did not want to know. Trusted people I did not want to trust. Who wants this hard stuff for their child? Now, I can’t imagine our lives without them.

For the amusement record, this is not the same as kids going off to college. I’ve had two to step out into this world. This is not the same, not even close. Not too long ago someone tried to equate the two. I smiled.