Sunday, December 25, 2016

"She Will Move Mountains"

Have you ever stopped to think about who might be sitting next to you on a plane? It's something I've pondered many times as I've traveled the country for Little Turtle.

There is...

The grandmother traveling out of state to be there for her sick grandchild who is in the hospital... #SickWithWorry

The newlyweds going on their honeymoon, their whole life ahead of them... #Giddy

The soldier returning from war, anxious to see family and scared to death that nothing will ever be the same again... #Terrified

The family who saved a little each month for years to go to Disney World... #BurstingWithExcitement

The brother who is preparing to attend his sister's funeral... #GriefStricken

The college student studying abroad this semester... #Adventurous

The businessperson who desperately wants to get home because a marriage is on the rocks... #HeavyHearted

A family going "home" for the holidays... #Nostalgic

And this week...

Mama Moon who flew halfway across the country and at the time, had only one mountain out of nine moved. All nine necessary for moving Little Turtle out of the nothing less than wretched facility she has been in so we could reach safer ground. I was an anxious wreck on all but one of the five flights this week! #MusicCheck #EssentialOilsCheck #SideKickCheck

I've never been so grateful for the routine of flying - the flight attendant who greets you in a very familiar, caring way, the reliable rules and expectations of "what to do" and "when" as well as the comforting routine of safety tips and being tended to with a drink and a snack. Such familiarity brings order to the chaos - a sense of "this is what you do." I have to wonder, "Do the friendly skies realize they are so incredibly trauma-informed?" #PutOnYourOwnOxygenMaskBeforeAssistingOthers

The emotions for me this week were indescribable. I've been planning, emailing, calling, texting, faxing, begging and otherwise, pleading for this move since September. We have faced roadblock after roadblock and then, more after that. I left our home state with determination, fear as well as a mix of hopefulness and dread. I wanted to feel brave, but mostly, I felt scared. I landed on the idea that bravery is more about action than emotion so I let my emotions be what they were and charged forward with my many, simultaneous and layered to do lists. There was simply no other option than transferring Little Turtle to the new facility, and I was not going to stop until it was done. #FierceLove #Determination

In my head was a giant flowchart of sorts. If this happens, I'll do this, this or this. If that happens, my options start with that and then, move to that and that. It was all about thinking ahead, impeccable timing and a little bit of "Certain people only need to know what they need to know until each mountain is moved." At the same time, I had to be flexible and ready for anything. Oh, and I also needed to focus on Little Turtle since it was the first she had been out of a facility with me in years. #StrategyBaby #And #BeInTheMoment #WhatCouldGoWrong

As for the mountains, here's what we needed:

Mountain #1: State medicaid contracts with new facility.
Mountain #2: Current facility agrees to a pass for MD app't. (Plan B needed.)
Mountain #3: MD signs the certificate of need for level of care. (Plan B needed.)
Mountain #4: Little Turtle is authorized for care at the new facility.
Mountain #5: MCO and facility negotiate and agree on fees and rate.
Mountain #6: MCO signs the contract with the facility for Little Turtle.
Mountain #7: IEP team agrees to the placement.
Mountain #8: Transfer is authorized and we're given the green light to travel.
Mountain #9: The "mess" is cleaned up.

We had to have everything but Mountain #9 accomplished before I could move Little Turtle from one out of state placement to another. When we boarded the first plane on Monday, we only had Mountain #1 moved. I thought Mountain #2 was an easy one, but that didn't turn out to be the case. The current facility was mandating Little Turtle's discharge by 12/28/2016 and refusing to sign a paper saying she needed continuing care. While we switched planes on Monday, I read an email saying that Little Turtle was not safe enough to go out on a pass with me on Tuesday for the second opinion that I had arranged on two days' notice after our Plan A in that department fell apart the business day before. To recap, the treatment team said she was safe enough to discharge but not safe enough to go on a pass. As a result, I had no choice but to pick up Little Turtle for discharge "against medical advice" on Tuesday (with the insurance company's support). That then kicked a whole lot of "awful" into gear. There was more back and forth communication with multiple individuals than you could imagine. By Tuesday, I had Little Turtle in my care with medication (thank goodness) and we had level of care signed. From there, the rest of the peaks up to and including Mountain #6 fell like dominoes. By Wednesday evening, however, everything had fallen apart because Mountain #7 was a flat out "no go." It was the worst possible scenario because:

- Little Turtle had already been discharged into my care. #NoGoingBack

- I had a letter in my hands stating that Little Turtle MUST receive immediate, ongoing inpatient treatment, yet I had no ability to move forward with the planned facility because the IEP team had said, "No." #Screwed

- I couldn't bring Little Turtle back to our home state because there would be no help for her here. It was my job, as her mom, to make sure she received the help the doctor said she needed. To not do so could be deemed medical neglect (justifiably), but I had no way to arrange it. #DoubleBind

What was I supposed to do?!?!

At that point, it became a process of elimination...

Staying in the state of the original treatment center offered us nothing. We had to travel. But where? Coming home was out of the question because there was no treatment for her here, and I could have faced a founded medical neglect allegation (understandably). The only place to go was to the state of the new facility. We traveled there on Thursday with no promise that she could be admitted. In fact, we had been told that without Mountain #7, she could NOT be admitted. We took a chance. #ABigFatChance #StressResponseSystemOnOverDrive #ForAllOfUs

With help from a few key people, lots of prayers and nothing short of a miracle as a mother begged on her knees, it worked. #PraiseTheLord

For now...

Little Turtle cannot stay unless we get the school piece figured out. It has to get worked out. There.is.no.other.option.

The flurry of communication that made this Christmas magic happen was truly unreal. In total, there were nearly 200 emails back and forth in five days, 90 phone calls, 75 texts and 5 faxes. #Unbelievable #NoWonderMyHeadWasSpinning

Tonight, I'm thankful so very, very thankful. I'm also disappointed and trying to prepare for whatever is necessary to move that last mountain. In true synchronicity, Mountain #9, which was not a "have to" for this move to be made, came through just as we were ready to leave the facility on Friday after saying goodbye to Little Turtle. #ASign

Tonight, on Christmas night, I feel like we accomplished the impossible and yet, I need to do it all over again because all we have is a temporary "fix." In addition, my heart is aching for my girl. We had the best time together this week. She said it all in the car on the way to the airport, "Mom, I forgot what it's like to be with you. I forgot what you smell like. I forgot how much I like it and how much I need you." #MeltMyHeart #BreakMyHeart #QuoteOfTheYear

For the first time in I don't know how long, I feel hopeful - genuinely hopeful. #PleaseLetHerStayUntilSheIsReadyToComeHome

As usual, this parenting of a severely traumatized kiddo "gig" is never short on adventure and heart-wrenching emotions. Wouldn't trade it for the world at this point although I'm sincerely hoping that 2017 can be an "easier" year. There's a tenth mountain in the works though so between Mountain #7 and Mountain #10, we'll just have to see how everything shakes out in the new year.

In the meantime, we are safe - something that was nowhere near an assurance three days ago. I am relieved, missing my girl and very glad to be home.

Merry Christmas to all and to all a good night!