On Thursday, I made something of a squeaky wheel of myself and called the main Gateway office and asked to speak to the administrator. After a pause, the woman who answered he phone asked the nature of my call in order to “get you through to the person who can best assist you.”
I told her my name and explained my situation, that Parrish has been an inpatient in their crisis stabilization unit for ten days, and I have been essentially left out of the loop. I told her that my only contact with the unit is when I phone them and that most of the times I call to check on P, I get an answering machine and no one bothers to call me back.
“In ten days, I have not spoken to a doctor despite having requested a call from him on two occasions. I have not received a single progress report. I am not only Mr. Gray’s mother, I am his legal guardian and it is my responsibility as well as my right to participate in his treatment and be kept abreast of his progress. I’ve been extremely patient, I think, but this is unacceptable.”
After about a minute on hold, she came back on the line.
“Okay, Ma’am, I’ll transfer you now.”
“To whom are you transferring me?”
“I’m connecting you to the crisis stabilization unit.”
“To whom at the unit? If I get the desk, I will no doubt have to leave another message.”
“I’m putting you through to the supervisor over there.”
And thus I had a conversation with “Julia,” the nurse manager at crisis stabilization. When I repeated to her what I said to the receptionist at the main office, her tone bristled.
“What exactly can I do for you?”
“You can get word to the doctor that I need to talk to him. It’s a simple as that. I need an update on Parrish’s condition, any progress he has made or failed to make, a sense of his prognosis. Is he better? Is he worse? And it may surprise you to know that I may have information about his illness that you do not have.”
“Okay. I will call Dr. Snow now and see if he can talk to you.”
It was nearly four hours later when I heard from Dr. Snow, and when he did call, he was a source of much information and comfort. He was under the impression that a person named Wayne had been updating me at intervals about P’s condition and was most apologetic for their failure to keep me informed.
The news was mixed. Parrish is not responding to his current meds. (Duh.) The plan now is to put him on Clozaril, but before they can do that, they have to recheck his white blood cell count because the drug can cause angranulocytosis, a failure of the bone marrow to produce white blood cells. It doesn’t take a genius to figure out that if white blood cells are diminished, the ability of fighting off infection is compromised.
Dr. Snow asked my permission to put P on the drug. His name will be placed on a national registry that monitors patients on Clozaril, and Dr. Snow is required to submit his lab results to that registry.
Parrish will be monitored weekly for the first six months. If there are no low white blood cell counts, he can be monitored every two weeks for an additional six months. Afterwards, he may qualify for every 4 week monitoring.
Yes, Clozaril a dangerous drug, but in 30% to 40% of patients with treatment resistant schizophrenia or schizoaffective disorder, it is the drug of choice. It is a difficult decision.
superiority for positive symptoms in treatment-resistant patients; 2) lower risk for suicide; 3) lower risk for tardive dyskinesia and suppression of established tardive dyskinesia; 4) improvement in cognition contributing to better work and social function; 5) higher quality of life and longer time to discontinuation; and, 6) decreased relapse.***
And some CONS:
1) agranulocytosis; 2) insulin resistance with increased risk of type II diabetes, weight gain, and various vascular complications; and, 3) myocarditis. There are also other unpleasant side effects, such as hypersalivation and increased risk of seizures.***
Yesterday, P called me at six in the morning to say he was going to the hospital because of his back, that he would need surgery and he would call me when he got there.
A little later, he called to tell me he is at the police station, having been arrested with some other people and charged with manslaughter because they had been riding in the car with a man who ran over a woman.
HIs latest call was to tell me he had been researching the Hindenburg Disaster and that it was a terrorist attack.
With delusions like this, coupled with his paranoid belief that his things are being systematically stolen from him and that he is being kept in a locked room and only let out to use the phone and eat, all while on a drug regimen that includes two antipsychotics, I am willing to give my permission for Dr. Snow to give P this drug.
Dr. Snow was unaware of the massive amount of Elavil that P took in his suicide attempt, and his first reaction when I told him was utter astonishment. I have to wonder why this information was not in Parrish’s medical record.
“It’s a miracle that he is alive! I have known patients who died from half that much. I’ve even known a patient who died from a buildup of the medicine in her blood while taking it as ordered.”
“Doctor Snow, could Parrish have damaged his brain with such a large dose?”
“There is no way to know. With that massive dose, there could be ongoing brain toxicity that will fade with time. That should be our hope and expectation. It could take two or three months to know for sure. Meanwhile, let’s wean him off the other drugs and start Clozaril. I have seen it work wonders.”
He apologized again for the failure of his staff to keep me informed about Parrish’s condition. He promised me that Wayne, a social worker, I think, would be in touch.
And this morning, I heard from Wayne. He did not apologize for keeping me in the dark, but what he told me was much more important. Parrish is now in what’s called a step-down bed, which gives the him two more weeks of impatient care if necessary. That gives us some breathing room and time to prepare for his dismissal, whatever shape he may be in.
More important, though, Wayne is putting into motion the steps necessary to have P qualified and enrolled in a home care program that is run by Gateway. It’s designed for patients who are too sick to be followed as outpatients in the regular clinic setting and provides three home visits every week so they can be followed and monitored closely.
It’s not a done deal, but I am hopeful. I feel as though a gift has fallen from the heavens right into my lap.
And it gets better. Sophie, my wonderful friend, is coming to stay with us for a while after P is dismissed. Sophie has been an Angel in my life for 40 years and has pulled me out when I was up to my knees in quicksand more than once. She looked after me when I could not walk straight or write or drive my car or remember what I said 10 seconds before. She is the picture of love, and Marnie said it right after she first met her.
“Sophie is the kind of person who makes you want to be a better person.”
I have nothing to add to that.
© 2014 cj Schlottman