The future

The annual art show at Imogen's school--curated by Lisa Summa, PS 34's amazing art teacher--was held tonight.  Lisa was inspired by James's positive energy and in a gracious gesture during his time in the intensive care unit, created a watercolor project for the children in which they all painted on the same small postcard, an echo of the scale of James's own work.  The theme was spring time.  James climbed the stairs to the second floor to see the outpouring of imaginative, colorful work made by the children.  He was overwhelmed by the luscious use of color and playfulness of every piece.

We found Imogen's piece and I snapped a photo.

On the walk home, James bumped into parents on the playground and chatted.  He was back in his element and Imogen was pulling on my arm as in the old days when James would linger on after school events.  We have to wait for daddy!

We had a doctor's visit earlier today with James's internist.  James and I were both incredibly lucky to be healthy people up until his brain infection.  We went to the doctors once a year for an annual check-up, neither of us were on any medications--it was all preventive medicine.  James's internist was a relatively new doctor since it had been such a long time since he was ill with anything that required a doctor's visit--we decided he should probably have one doctor to call on in an emergency.  It was a coincidence that she was affiliated with Mt. Sinai.  

She was only aware of the recent visit to the ER for the aspiration pneumonia--I had to review James's case from the beginning.  I am accustomed now to summarizing his initial misdiagnosis of the flu, the diagnostic tests that discovered the abscess, the various surgical procedures, identification of the bacteria and related tests to discover the source, his rehabilitation, restricted diet and current concerns. It takes a few minutes to complete. I have created binders to organize his medical information--the neurological intensive care unit at Bellevue, Mt. Sinai rehab, Visiting Nurse Service of New York, health insurance, and legal documents. I have a current binder I take to check-ups that provides his case history and related discharge papers.

The doctor asked me if I had a medical background.  

It was good to review the case with her because she's a very advocate-oriented doctor. She sighed and complained about the health care system after hearing my summary review.  James and I landed in the void that becomes evident after discharge from a complicated medical event like James's infection. He was surrounded by a dedicated team of doctors while in intensive care but then, afterward, there was no single doctor that was overseeing his case. James's doctor at rehab served only in the confines of the rehabilitative aspects of his recovery while in hospital--it's very circumscribed. James's internist asked me who his main doctor was currently and I smiled at her and said, "Well, it appears to be you."

Really, it appears to be me.

James's mystery was not solved regarding his infection so it remains a latent threat and he has various additional factors to contend with now--his inability to swallow properly, his neurological functioning, the tube in his stomach and it's eventual removal, the pulmonary aspects of his recovering with regard to the risk of pneumonia, and the rebuilding of his muscle control and balance. James's internist wanted to know who would be dealing with all those different areas of his recovery. Hmm. Good question.

Again, it appears to be me.

Not quite. I am just in charge of herding the cats--the cast of characters of each specialist doctor.  James's internist was kind enough to set me up with referrals for specialists to add to my list. I explained to her that I wanted to consolidate all of James's care at Mt. Sinai and that the visits to Bellevue that I have scheduled are simple follow-ups with the initial team since they have the history of James's intensive care in their case documents--it is lacking with the new doctors with the exception of my summary routine.

I have been the person to schedule James's various tests. I am placing the orders because, again, we are in that void.  I have to be the person that contacts the radiologist and then, connects that scheduler with a doctor to write the referral for me. It is absurd, especially since the doctors actually instruct James to have tests done in his discharge papers but then, completely fail to put in the order/prescription that is necessary for me to schedule the test. 

It is tedious to even write about more or less actually spend a large part of my day doing.

I told James tonight that I should make a pitch to a friend of ours to create a "discharge app" that would fill this void and make a bunch of money as it spread like wildfire across the country to be utilized in all hospitals.

A little advancement earned from the suffering and frustrations of the ill--must be the American way. The internist complained to me that the solutions created to solve the health care industry problems add layer upon layer of useless methodology.

I wanted to write about a funny cognitive exercise James did yesterday with Jack. I have to sleep though--another doctor's appointment tomorrow.

I am grateful that James and I could walk together through the school this evening and see the future glowing all around us.  I especially enjoyed seeing one girl's hand completely covered with melted chocolate chip cookie as she ran past with her mother in tow.