Drama in Day Surgery

Ari's health is the best it's ever been, so I decided to take a month off from writing and focus on summer activities with the kids.  This is the first time I've been home with them during summer break and we are all excited to have fun!
For the most part, it's been great.  We've played games, gone swimming, jumped on the trampoline, had playdates and enjoyed lots of out-of-town visitors.  The house has been buzzing with activity.
Check out Liv's crazy, mid-flip toe touch.  Larry had to work hard to send her flying high enough to do this!

**Priceless Photo Moment**

 A picture with BOTH sets of grandparents. Those are some happy kids!

Everything was great until a few weeks ago.  The change came in the form of a phone call.  As soon as  I saw the number come through, anxiety gripped my chest.  It's a 303 area code, I know it well and hate it from deep inside my body.  It's a call center in Colorado to remind me in its cheery, robotic voice that my child has a procedure at Children's Healthcare of Atlanta and to complete the online, pre-anesthesia paperwork.  From this point on, I will receive this same recording every single day until some sort of action is taken to make it stop.

Well, you know what I have to say that? "Fuck you, 303.", referring to the call by it's unofficial nickname in our house.  I know... I've never sworn in my blog before, but 303 deserves it!  It's a mood killer, an anxiety creator, and a beacon of doom.

"I got the call today."  I told Larry at dinner.
"303? Already?"  He asked, "I hate that call." 

"Me too."  I agree, narrowing my eyes and silently noting that the air felt a little thicker, making harder to breathe.
After a few days of receiving the calls,  I reached out to the Anesthesia Department.  Just like all of the other times, I explain that all of our paperwork is on file and any changes in Ari's health will have to be discussed the day of the procedure due to the inconsistencies of his health.  The calls stop, but the countdown checklist begins, with calls the week and day prior the procedure. We get all of the instructions, including when to arrive, when he can last have food and when he can last have clear liquids. His procedure was not until 12:45 p.m.  I made a mental note that he's going to be hungry.  As if on cue, mid-morning on procedure day  he stood in the middle of the family room, sobbing that he just wanted some water.  I felt so bad for him and did not allow myself to eat or drink either, hoping the self deprivation would reduce the guilt.

His mood lifted when we arrived for the MRI on Wednesday.  Ari is well known in Day Surgery and enjoys the high-fives and hugs he receives each time.  Once in a pre-op room,  I get him into a gown and answer the same questions that are asked before each surgery... changes in meds (no), diet (no), home life (no), blood transfusions (yes), MRSA (yes), last time he ate or drank, etc...
"What are you having done today?"  The nurse asked.  "MRI of the sacral area of the spine." I answer.
"AND..."she said, dragging out the word.  "There's no and." I replied.

"Dr. Smith...??" She continued to prod. "We're not seeing him today." I replied confidently.  "Mitrofanoff...???" She asked, raising her voice in the one word question.
"Wha... NO!!... Wait... NO!... NO!"  This is a no cutting day- I promised Ari.  The Mitrofanoff is a 4+ hour surgery, wide open abdomen, major cutting, life changing, 10-12 day hospital stay, 12 week recovery.  NO, NO, NO, NO, NO.

But there it was... on their schedule for today.  They cleared an OR for the entire day, plus surgeons, anaesthesiologist, and OR staff.  A room was waiting for us on the in-patient  floor and everything was all-clear with insurance.  Everyone knew about this except for us.
"Hurry up!" I text Larry who was already on his way to the hospital.  "They want to do the Mitrofanoff!!?"
"What?... NO!!!!!" Was his response.  He's right... I should listen to him.  I should regain my composure.  "NO." I repeated in my head as I looked around at the confused faces in the room.  "Please page Dr. Smith." I requested.  It had already been done.
Was I about to turn my back on fate?  Was it meant to be this day? We were in room 44 and 4 IS my lucky number. Everyone is prepared... everyone but us.

"There is no fate in surgery, Jodi." Larry reasoned with me. "He's not prepared and we're definitely not prepared." "Plus... he's not even cleared by neurosurgery for it yet."
He's right... that's why we're here- to check and see if Ari's spinal cord is re-tethered and if he needs it to be released.

How does a  mistake like this happen? The doctor wasn't happy and neither were we.  I thought hard... During our last urology visit, he wrote the orders for the surgery, knowing we needed to do the sacral MRI and meet with neurosurgery before proceeding.  It was supposed to stay in Ari's file until we were ready to schedule it and then the paperwork would already be cleared.  "My scheduler said she spoke to you in April." he stated.
After a brief moment of self doubt, my mind cleared.  Of course we didn't talk.  A parent doesn't forget scheduling a major surgery, especially THIS parent, when one's child is not even cleared for the procedure.  His scheduler was lying and I was anxious to call her once Ari was taken back, but not until after I found out if neurosurgery had coordinated the MRI to be on the same day.  It was too ironic that the procedures were on the same day.

Looped up on "happy meds", Ari gave us one last ROAR and was wheeled into to pre-op.  As soon as he left, I started making calls.  Neurosurgery did not coordinate with Urology. It was a random twist of fate that they happened to be scheduled on the same day. Once that was clear, I contacted the Urology scheduler who admitted she had no documentation of speaking to me and was surprised that I received no pre-op paperwork or test requirements from them. "Well, I'm sure the hospital called you." she said in a last effort to clear her mistake. The 303 calls flashed through my head and I answered "Yes, they did. They said my child has a procedure. The hospital never discloses what the procedure is on the phone."

Game point.  Unfortunately, Dr Smith was the one who lost, not his staff... a sad realization. 

Thankfully, the MRI went as planned (it was about two hours long) and soon Ari was brought back from recovery, requesting a slushy. 
Ari was excited to have his Daddy hold his hand when the IV was pulled.  I actually caught the moment on my phone.  He's still so small.

This brings us to tomorrow, when we will meet with Neurosurgery to find out the results of the MRI.  This appointment will map out Ari's (planned) surgeries for next 6 months.  We have some big decisions to make and will be praying for the strength and clarity to do the right thing. I'll update the blog once we know what's next.

Until then, I have a favor to ask... if you have not registered to receive automatic updates when I update the blog, please do so.  The book agents I spoke to loved the story and the writing, but suggested I increase the amount of followers and blog views. I'll do my part, which is more frequent updates to keep it interesting.

I really appreciate your help and support... please pass it on and encourage your friends to sign up as well. THANK YOU!!!

XOXOX Jodi