Dirty knees

For those of you not taking notes (detention is this weekend) or have gotten lost in this mess … Pearlsky needs an amino acid to survive, the only person in the world who refuses to give it is the “Coordinator of School Health Services,”  i.e., head nurse, of the school district, I have fought this for years, etc.  The nurses at the state Department of Public Health back me up 100%, as does the school administration. It is now coming to a head. So, here is the latest email trail alluded to in the last post …

Note in her first email, I am referred to by first name (fully appropriate). Also worth noting that this email (and hence all subsequent responses) was cc’d to the Assistant Superintendent (her boss), the consulting doctor for the district, all of the high school nurses (her subordinates), the classroom teacher, and the new special education coordinator.

Dear SingleDad,

Sorry for the delay in getting back to you. It took some time to research and consult with DPH, our school physician, Dr. Smith and the Assistant Superintendent. The amino acid as you know is not a medication. It is considered food. It does not require a licensed professional to administer it. Pearlsky has successfully received the amino acid for more than 10 years from her 1:1 para. I regret that Pearlsky received her amino acid late on one occasion this fall. A suggested remedy would be to create a fail safe plan so that the staff member assigned to Pearlsky would make sure that it is given. KM, Pearlsky’s aide for 10+ years assured me that she would take responsibility and she has set up a check off list to this end. There are many duties that nurses can perform, but we do limit those duties that are non- nursing. This optimizes care for all students who do need professional nursing care, so they might be treated in a timely manner. We regularly leave duties that can be performed by unlicensed personnel to paras.

If this is no longer acceptable to you, I will assign the administration of amino acid to a nurse. Nurses cannot administer a preparation that they have not prepared. As licensed professionals they are held to a higher standard of care. To that end, we would need the sealed pharmacy labeled package brought to school with appropriate utensils etc, so the nurse can constitute the amino acid. Nurses will also need to speak directly to the prescribing physician as necessary, to discuss dosing schedule and signs and symptoms of toxicity. Noon doses of meds and amino acid would be given in the community based program by the nurse in the program and the 2:30 meds and amino acid would be given in the health clinic, as the program nurses leave at 2pm. Please confirm if this is how you wish to proceed.

To which I was compelled to respond (by first name) …

See my responses mixed in with your email.

>Sorry for the delay in getting back to you. It took some time to

>research and consult with DPH, our school physician, Dr Smith

>and the Superintendent.

Actually, the questions as to why the nurses stopped giving the amino acid when you assumed your position have been happening for several years. I do appreciate that we finally have some answers, thank you.

>The amino acid as you know is not a medication. It is considered food.

I did not know that, the FDA considers it a dietary supplement, actually.

>It does not require a licensed professional to administer it. Pearlsky has

>successfully received the amino acid for more than 10 years from her

>1:1 para. I regret that Pearlsky received her amino acid late on one

>occasion this fall.

It has been less than ten years, and she has missed it on more than one occasion.

>A suggested remedy would be to create a fail safe plan so that the staff

>member assigned to Pearlsky would make sure that it is given. KM,

>Pearlsky’s aide for 10+ years assured me that she would take

>responsibility and she has set up a check off list to this end.

That has failed on several occasions. Seeing that when Pearlsky misses two doses of the amino acid she starts to have seizures, I think it irresponsible to be left to an aide.

>There are many duties that nurses can perform, but we do limit those

>duties that are non- nursing. This optimizes care for all students who do

>need professional nursing care, so they might be treated in a timely

>regularly leave duties that can be performed by unlicensed personnel to

>paras.

Are you saying it is not the nurses duty to ensure that Pearlsky gets the amino acid that is doctor prescribed, medically mandated, and is necessary to keep her seizures, tone, and more, under control?

>If this is no longer acceptable to you, I will assign the administration

>of the amino acid to a nurse.

Actually, it has never been acceptable to me, nor Pearlsky’s doctors, as shown by their repeated orders on your PCP form.

>Nurses cannot administer a preparation that they

>have not prepared. As licensed professionals they are held to a higher

>standard of care. To that end, we would need the sealed pharmacy labeled

>package brought to school with appropriate utensils etc, so the nurse can

>constitute the the amino acid.

HOW CAN I SUPPLY A SEALED PHARMACY LABELED PACKAGE for something YOU CALL A FOOD?

In an October 1 email TO YOU FROM THE DEPARTMENT OF PUBLIC HEALTH, the School Health Advisor says that it can be given to you in a manufacturer’s container, not sealed. NOTHING from a pharmacy comes “sealed” … any liquid medications from a pharmacist ARE NOT SEALED.

WHY ARE YOU DEMANDING SOMETHING THAT DOES NOT AND CANNOT EXIST and contradicts the Department of Public Health’s advice?

>Nurses will also need to speak directly to the

>prescribing physician as necessary, to discuss dosing schedule and signs

>and symptoms of toxicity.

“Food” does not typically have signs and symptoms of toxicity. Dosing has been included ON EVERY PCP FORM submitted for the last 12 years. Why is there a dosing question IF YOU HAVE IT IN WRITING FROM THE DOCTOR?

>Noon doses of meds and the amino acid would be given in

>the community based program by the nurse in the program and the 2:30

>meds and amino acid would be given in the health clinic, as the program

>nurses leave at 2pm. Please confirm if this is how you wish to proceed.

I hereby confirm that it is time to stop the “unjustified failure to provide treatment and/or services necessary to maintain the health and/or safety of a patient” and wish to have the nurses give the physician mandated amino acid to Pearlsky as outlined in the PCP form.

Thank your for your time and consideration.

Note that the quote in the second to last sentence is a direct quote from the state’s legal definition of nursing neglect.

I then find out that the nurse is in the Assistant Superintendent’s office, and both have read my response. A few hours later I get the following email, addressing me by my last name …

Dear Mr SingleDad,

I do apologize, I miswrote.. I did mean manufacturer’s unopened container. Most food products that are provided in powder form come in a sealed container to insure that it is tamper-free. Are you unable to provide a labeled unopened package or canister from the manafacturer? We will make every effort to work with you on this. Please advise.

Hmmm … major change of tone, but still annoying … so …

Ms. Nurse:

Ever since Pearlsky started in the school district, about 15 years ago, when more of any medication was needed, the nurses send home the empty pharmacy bottles for me to refill. Your nurses still do it, they send home Pearlsky’s Tegretol bottle, for instance, and specifically ask me to “refill it.” I do, from larger supplies that I have, from the pharmacy. Even when I bring a bottle directly from the pharmacy, it is not sealed, pharmacies do not seal containers. I have never given a “sealed” bottle of anything to the nurses, since they just don’t exist.

As to the amino acid (which, although you keep calling a “food,” the FDA classifies amino acids as “Dietary Supplements” here: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm050803.htm ) I purchase it in 5 kg bags for about $500 each. It comes in a large plastic bag, pictured below, directly from a pharmaceutical grade supply house.

I do have some labeled 100 gram jars from a company that has supplied the amino acid in the past but no longer carries it.

You trust that I put unadulterated Tegretol in the Tegretol bottle, unadulterated Valium in the Valium bottle, and unadulterated Motrin in the Motrin bottle. Why do you not trust that I will send in unadulterated “food?”

I have discussed this specific issue with the Department of Public Health about an hour before my email and theirs, to you and the Assistant Superintendent, on October 1 of this year. They fully understood the issue of packaging.

I can send in unsealed manufacturer’s jars, I can send it in in liquid form as I have for 15 years to make everyone’s life easier, or any other way you like. I cannot send in a 5 Kg (approx. 11 pounds) sealed bag, for alas, I cannot afford the expense, since I pay out of pocket.

I probably should have left it there, but was up a lot thinking about it. Hence, a final email this morning (final, so far) …

Ms. Nurse:

Some additional information as you are deciding what practical manner you would like the amino acid delivered.

I have given unsealed containers of the amino acid to [our big city children’s hospital], [the other  children’s hospital], [my son’s first residential school], [son’s current residential school / hospital], [yet another hospital], and the school nurses previous to your taking your current position and every single medical professional at those facilities both considered the amino acid as they would a drug / medication AND used the amino acid I provided. Pearlsky’s doctors consider it a drug / medication as proven by their orders to you and your staff every year for the last 13 or so.

The only medical personnel to ever refuse to give Pearlsky or David their amino acid have been you and your nursing staff, contradicting direct doctor’s orders given yearly, at the beginning of every school year, on your PCP form. I want to personally thank you that finally the continued “unjustified failure to provide treatment and/or services necessary to maintain the health and/or safety of a patient” will soon come to an end.

I await hearing how you want the amino acid delivered to your nurses. If, in fact, you want it in powder / crystalline form, I can supply an accurate scale.

Again, thank you.

As I said, I’m tired.