Madness I Say, MADNESS!

I honestly believe that I blew capillaries in my cheeks. Literally. Our hearing today was possible the most traumatic event I've ever experienced, short of the day Dovi was diagnosed. I kid you not.

Today, as I told you all, was our hearing with the State of Illinois regarding Dovi's eligibility for the Technology Dependent / Medically Fragile Waiver, which entitles us to Nursing Services, and by extension, Medicaid. As many of you know, Illinois ranks something like 45th of all the states for services for the disabled. We were informed by the State in October that they were not renewing his Waiver eligibility. It was unclear as to WHY he no longer qualified-and the lovelies refused to tell me. Until I enlisted my handy dandy Alderman's Office, who got me the scoop: evidently b/c Dovi had started eating some food by mouth he was no longer considered Technology Dependent, and b/c his blood pressure was somewhat under control, he was no longer Medically Fragile. Nice.

I guess we could ignore the technology of fluids by g-tube, 50% of calories by g-tube, aug comm device, EBI bone stimulator, wheelchair, etc, and the fact that he has a rather severe case of FD as his medical fragility. Yay! he's eating some food! Kick him off the waiver.

So after 2 postponements, off we went to 401 S. Clinton today for our hearing. Present were: me, Benjie, Hal (our previously mentioned attorney), the hearing officer, and by phone, the doctor from the state who made the determination as well as some type of nurse-I'm still not 100% sure what her role was.

IT WAS INSANE.

I honestly thought Hal was going to KILL me (sorry about that, Hal) when I literally jumped out of my chair and said "That's a LIE" when the "doctor" informed the hearing officer that
1) Dovi does not use his g-tube anymore
2) FD is a common disease
3) Dovi has a mild case of FD
4) Dovi doesn't have FD crisis ever
5) Dovi doesn't have most of the symptoms of FD.
6) ooh this was funny-he must not be severe b/c if he WAS severe he would not have been able to survive a surgery as involved as a scoli repair, and since Dovi had it twice, by extension, his FD is mild. Honestly. The man said that.

OK. I got a bit out of control. Maybe the red face, tears rolling down my cheeks, and arm flapping was a bit much. But HELLO!!!! This guy was flat out LYING!!!!

We came armed with mucho ammunition: letters from both Dr. Axlerod and Dr. Maurer listing item by item both Dovi's Medical Fragility and his Technology Dependency. The most recent yearly letter from Dr. A where she talked about how the nurse is keeping him healthier etc.

The doctor REFUSED to admit that possibly, just maybe, Dr. Axelrod knew more than him. He actually had the gall to call himself an expert in FD. Hal pinned him to a wall:
"Are you, Dr. Kim, saying that you DISAGREE with the assessment of Dr. Axelrod, Director of the Dysautonomia Treatment and Evaluation Center and worldwide expert on FD that Joseph is BOTH technology dependent and medically fragile"
"Yes. I disagree with that assessment"

Another little pearl:
"It is impossible that Joseph has all the symptoms of FD. If he had all the symptoms, he would have to be hospitalized."
Huh?

My little gems:
"I would like to address the statement by Dr. Kim that FD is a common disease. Joseph is case 512 out of 623 people in the world with FD. That is not common"

"Joseph is dependent on his g-tube for 100% of his fluid intake and an average of 75% of his caloric needs. If we removed Joseph's g-tube today, he would be dead by Saturday, either by dehydration or aspiration pneumonia"

"Joseph had to have scoliosis surgery in 2005 because, left uncorrected, his spine would have curved into his lungs, impaired his lung function, and he would have died"

"Joseph is considered, in reality, to be severely affected by FD"

End result:
I have no idea how this occurred, but this is it:
The nurse is contacting DSCC (the agency that administers the waiver) to request additional medical records from his latest hospitalization. I honestly have no idea why his MRSA hospitalization is germane to the medically fragile technology dependent issue, but heck, enjoy the medical records.
IF there is to be another hearing, we will be contacted by our hearing officer as to when it will be. However, she did indicate to us that there might not be (as in we are right and the idiots in Springfield are wrong)-but if there is, it will be in either June or July-but she seemed to be of the opinion that there probably won't be.
This was basically their way of ending the hearing without conceding that we were correct. It was honestly ridiculous how we ripped that doctor to shreds. I almost felt bad for him. Then again, maybe not.