Jan 28, 2011

"Anyone Who Becomes Belligerent..."

The Baby and the belligerent finger

The Baby had a neurology follow-up with our new-ish neurologist, Dr. Normal this morning. He is normal. Nice. Intelligent. A father. Compassionate. Funny. And he told me today he has high cholesterol and never does what his doctor tells him to do. How can you not love Dr. Normal?

For 18 years I managed to avoid Snooty Neurology Group in the children's hospital. As a nurse I turned down a neurology promotion because I could not justify working with this practice. They embarrassed me as a health care provider and I did not want to be associated with them.

So to manage The Teenagers cerebral palsy we went to Dr. Hottie Cuban Guy instead. Then he moved to Miami. Before he moved he gave me his private number and told me if I was ever in Miami to call and he would "give me a tour." I may have fantasized about that "tour" one or two times over the past 1 1/2 decades.

So. After saying adios to Dr. HCG we went to Dr. Awesome Mom. Dr. Awesome Mom quit within the year to stay home with her tweens who needed her.

So. We went to Dr. French University Professor. She quit after a few years to limit her practice to the big city exclusively.

So. Then we went back to Dr. Awesome Mom who by then had gotten her unruly tweens under control and returned to practice. She lasted one visit and then quit due to politics.

So. Then we went to Dr. Normal who had just signed a 7 year lease and assured me "he would not be going anywhere." When we went back for our 6 month check up he came in and sheepishly informed me he was breaking that lease to accept a very prestigious position at the children's hospital.

Losing Dr. Normal made me cry.

In December of 2009 when the Teenager had her very first seizure we ended up in the dreaded Snooty Neurology Group office since there were no other options. The first thing you see when you sign in is this sign:

If you have problems ask to speak to the office manager or nursing supervisor.
To provide a comfortable environment for our patients we ask that...
You refrain from the use of profanity
Anyone who becomes belligerent or abusive to a staff member or a patient of Snooty Neurology Group will be asked to leave.
If you do not leave we will call security.

The Boy being belligerent.

Because my children have Medicaid The Teenager never got within 50 feet of the actual Snooty neurologist. She saw the nurse practitioner two days after the initial seizure and concussion and only because I have two friends who work in the Snooty Office who made sure we got an immediate appointment. When I told one of those friends that the ER told me Snooty Neurologist (who couldn't be bothered to even show up at the ER) wanted The Teenager to be seen in in his office in 24 hours because of the concussion she suffered falling during the seizure my friend informed me, "now you know he never said that. They just tell parents that in the ER to get them out of there."

Yep. I know that's right.

In the early 60's Olshansky described a pervasive psychological phenomenon observed in parents of mentally retarded children. He contended that chronic sorrow is a natural and understandable response to a tragic event, and is manifested throughout the lifespan of the parent-child relationship when the child has special needs. This was a big contrast to the previous theorists who believed the non-resolution of mourning to be unhealthy. Olshansky disputed the closure stage of other theorists as it symbolizes acceptance, which he saw as a simplistic and static concept. He argues that sorrow is a normal response to an overwhelmingly tragic event.

Like having snooty doctors who determine your child's worth based on how well the insurance company reimburses him? Chronic sorrow, indeed.

Months later I got word from a nurse friend that Dr. Normal was seeing a handful of seizure clients in addition to his job as big chief of epilepsy surgery. She asked If I wanted her to ask if he would see my girls. He agreed to see both The Baby and The Teenager.

Happiest day of my life.

Today we saw Dr. Normal for The Baby's 6 month follow-up and discussed weaning The Baby off of her Phenobarbital which she has been on for 3 years. He approached me with the idea of weaning 6 months ago but I was not ready. If it isn't broken don't fix it? Right?


I made the mistake of taking a course regarding drug withdrawal in neonates for the 24 hours of continuing education I need as an RN and the 36 hours I need as an Early Interventionist. Besides getting some CEU's I realized I needed to get The Baby off of the Phenobarbital which was long-term bad news.

I confessed to Dr. Normal that the CEU course was the catalyst for my decision. He confessed he never listened to his doctor either thus the cholesterol story.

Of course due to her neurological devastation from the birth in the hallway she has an extremely high potential for seizures. Dr. Normal stated, however, that even if she begins having seizures during the Phenobarbital withdrawal process he would not ever put her back on it. She would go on a more appropriate seizure medication instead. This was comforting. Comforting you may ask? Yes, people. You take what you can get.

Belligerent? I'll show you belligerent.

We barely made it to this mornings appointment with Dr. Normal as my alarm did not go off at 6:00. Instead I woke up to sunlight at 7:22 am and nearly stroked out. The Boy leaves for school at 7:30 am. The appointment was 8:20 am. Try getting 3 medically complex children and yourself ready in less than an hour. I dare you.

After seeing Dr. Normal we screeched to The Boy's school to pick him up for his monthly school bowling field trip. He can't ride the bus with the rest of the school as it doesn't have seat belts. Brittle bone disease + no seat belts = no way.

The teenager locked the car while I was getting The Baby in the wheelchair at the bowling alley. Unfortunately, she locked my purse and the keys in the car. I have used up my AAA allotment for the year working in the hood and getting flat tires monthly.

Uh oh. I cannot afford a locksmith.

The Teenager starts the slow, simmering melt down process as she realizes no debit card means no cheeseburger in bowling alley paradise. She is barely keeping it together. Call me unreasonable but even though she is developmentally delayed she is not autistic therefore I think she should be able to grasp the concept of delayed gratification. Right?

Boy, was I wrong.

By the time my dad gets there with my spare key The Teenager is in full blown cheeseburger withdrawal meltdown. The Boy's teacher hands The Teenager to me with one hand and her wiglet which she has ripped out of her head with the other.

We leave the bowling alley and The Boy and I both agree we are humiliated by The Teenagers cheeseburger melt down.

I am exhausted but In three hours we are going to Hospice's Family Fun Night to spend the evening with Winter the dolphin.

Family Fun Night? Now there's an oxymoron.

Or am I just being belligerent?

1 comment:

Melinda said...

you are hilarious! Love your writing and the truths you speak about medicine and social injustices. I was blocked from your site for awhile so i'm so relieved i can read you again! thanks for your witty candor :)