Monday, November 22, 2010

"The DIAGNOSIS" part 2

Writing this is incredibly therapeutic yet draining; this stuff can't be mired in and recalled daily or you can't live life.   It's called compartmentalizing, it's how many of us live.  OK, lets open this compartment....
After she left, I cried hysterically alone in my room for the first time of many while the kids watched TV downstairs, oblivious.  Monday morning my phone calls began.
'Steps for Developmental Evaluation'
#1 Start at the insurance company. Call for pre approval.  A developmental evaluation is considered 'mental health' which is often carried by a different company than your medical, although same insurance. Confusing? Of course. Got pre authorization for dev eval.
#2 Who does the evals? I skipped UMass and went straight to Children's Hospital.  Why? I'm not fucking around. I want answers, from the right people at the right place.
#3 Although Children's is covered by the MEDICAL part of the insurance, it's not by the MENTAL HEALTH.  WHY? Who the hell knows.
#4  Get to know my case manager at the insurance company.  Her name was Cookie.  Because so few hospitals have exams for 20 months old, Cookie went to bat for me and was able to convince her boss to cover Children's because they will be paying the same fee anywhere and few available hospitals.
#5 Switch pediatricians.  Get one at Children's hoping it will help me get in faster.  He tries to help but due to being young and 30 he misdiagnoses O, potentially screws up his chances to get in faster, and I have to set the boy straight. 
# 6 Same time filled out 10 page application for Children's, faxed it in, and talked to both billing and a social worker.  Talked to Cookie a few more times.  Cookie talks to Children's.  Finally all approvals comes through.   
# 7 Eight month waiting list for Childrens.  I tell them I will go on the cancellation list and they can call me last minute. We get seen in a little over a month.

Evals done - cognitive, fine motor, gross motor, verbal, medical, bloodwork.
Children's Hospital Boston is an unbelievable hospital.  It's a freaking carnival.  Beautiful, colorful, warm.  Everyone, from the docs to the nurses to the valets - awesome.  The developmental pediatrician we meet with, Dr. Rappaport, is the chief and director of the whole department.  Loved that luck of that draw.  What was great about him is he admitted what he didn't know - Owen was developmentally delayed, not sure why, he may potentially be completely fine or he may not.   Wait and watch and see. And wait for bloodwork - as long as that came out OK, there would be a chance everything could be fine.  He said that would take 2-3 weeks.
It took 5.  And those were 5 agonizingly long weeks that I won't forget but don't really remember, in a haze of hope and prayer and bargaining and negotiation.  As long as those tests came back OK, there was a chance Owen would be OK.  Please God please God please God PLEASE.  I'll do anything.  I'll go back to church. I'll be nice to my mother.  Please. Please please please pleasepleasepleasepleasepleaseplease.
As the various tests came back, Dr. Rappaport would email me "Negative. Negative. Negative. Negative."  At times I would email him - 'any news?' Usually within minutes I would get a response "No, nothing yet.'  I was impressed that this very busy, very important man was almost immediately available at all times to me. 
The last test was Fragile X, and it took 5 fucking weeks.  I had missed a call on my cell one Friday morning - in late March or early April I think, this date is stricken from memory - and it was a call from Children's.  The voicemail was from Dr. Rappaport.  Call him.  My heart raced immediately and I can remember the fear and adrenaline pumping through my veins - he called. He called.  No no no no.  If the test was negative he'd just email....Ran downstairs to find an pen to write down his number from the message - standing in the kitchen, at the table.  His voice soft and gentle "I'm so sorry, the test Fragile X test is positive." I heard his words but somehow they didn't make sense.  "He has Fragile X?"  "Yes."  I could hear the genuine apology in his voice.  I don't remember much of what he said after that.  Something about new research for medications coming out, something else about calling the Fragile X clinic.   I wrote down the numbers he told me to, bending over the kitchen table, writing on the back of a napkin, not feeling like I could breath, not knowing how to write, not understanding the words he was telling me.  Wanting to hang up, escape, run, hide, disappear, die.  No no no no no no noooooooooooooooo.

I hung up.

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