In a blog entry from April 2011 entitled “Survivor,” [To
read this entry, click here.] I described my love of reality competition
television shows, such as The Amazing Race, Dancing with the Stars, and The
Apprentice, and I suggested a challenging season for a perennial
favorite—Survivor: Autism. For this season, contestants would have to complete
tasks autism parents regularly face, such as fighting insurance companies for
benefits and searching for the best therapies and interventions to help their
children, as well as patiently dealing with their children’s unusual behaviors,
including watching videos repeatedly. This week, I realized that one more
challenge could be added to my proposed reality show: "Telephone Tracking," in
which contestants armed only with a phone try to get needed information as
quickly as possibly without losing their tempers or their sanity.
One of these tasks would involve tracking down medically
related information. About a week ago, I called Alex’s psychiatric nurse
practitioner’s office with concerns that he was jittery upon awakening, like
someone who had drunk too much coffee. He would physically shake and tell us
that he was “nervous.” As with many medical offices, to speak with a human, I
had to listen first to the recording that warns the caller, “If this is a
medical emergency, please hang up and dial 911” before I could speak with one
of the nurses. After explaining Alex’s condition, the nurse relayed the message
to the nurse practitioner, and the nurse called me back promptly, which I
appreciated. Thinking that Alex’s bedtime medications were not carrying him
through the night until his morning medications became effective, his nurse
practitioner decided to increase slightly two of his bedtime medication
dosages. This change made complete sense to me, and I was glad she was willing
to make this adaptation without needing to see Alex first. To monitor the
effects to these slight modifications, she also wanted him to have a blood test
after one week to check the levels of these two drugs to make sure they were
within proper ranges. I asked the nurse
to send lab orders to the lab where we have taken Alex the past several months
to have blood draws, and she told me she would take care of this.
Because my goal is to keep things always moving smoothly for
Alex, I decided to call the lab a few days ahead of the blood draw to make
certain that they had received the orders from the nurse practitioner’s office.
This lab test requires fasting, which meant that we would be taking Alex as
soon as he awakened and before he took any of his morning medications and
before he’d had anything to eat. I didn’t want us to get to the lab and have
any paperwork confusion while we were also dealing with a hungry kid in need of
his medications. When I called the lab, they checked through the records and
did not have orders for a lab test for Alex, so I had to call his nurse
practitioner’s office again, this time armed with the phone number of the lab.
The nurse told me she would check his file and call me back. Once again, she
returned my call quickly and informed me that they had sent the orders to the
wrong lab. I asked her to send them to our chosen lab, and she assured me that
she would do so. After waiting a few hours, I once again called the lab to see
if they’d received the orders, and they told me that the nurse practitioner’s
office had faxed them that afternoon.
So, after four phone calls, we seemed to have everything straightened
out for Alex’s blood tests.
On Wednesday morning, we waited for Alex to awaken so that
we could take him immediately to the Chesterton Health and Emergency Center for
his lab work. Once we arrived, we were pleased to see that we were the only
ones in the waiting room, and Alex happily watched the big screen television
with Ed as I completed the necessary paperwork with the registration clerk. As
she was typing in the information, she asked me, “Is his doctor’s office open
right now?” This made my stomach turn, as I suspected some crucial piece of
information was missing. I told her that I knew his nurse practitioner was
likely at the hospital doing her rounds in the morning rather than being at her
office. Then I asked why she needed to call, and she said that the office had
failed to provide a diagnosis code for the testing, which insurance would need.
Immediately, I told her that his diagnosis is autism, which is code number
299.0. She still seemed a bit hesitant, and I more assertively told her that
every test we had done there had been under the 299.0 diagnosis. Apparently, I
was convincing because she went ahead and completed the registration process
without calling the doctor’s office.
After that, the lab technician called us back to do Alex’s
blood draw, and he, as he always does with lab tests, handled the procedure
amazingly well, calmly sitting still the entire time. Moreover, he didn’t even
flinch when the needle went in his vein. The lab technician was efficient and
pleasant, and we were relieved to have that task behind us. One surprise in all
this, however, was that they told us his nurse practitioner wanted the test
repeated in a week, which her nurses had not conveyed to us in the four phone
calls I had with two of them. And so, we
will do this again later this week, and hopefully Alex will be just as
cooperative as he was last week. On a
positive note, the change in medication seems to be helping Alex in the
morning, so the efforts I’ve made through the various phone calls have been
worth my time. Also, the lab has the orders for the upcoming test, so I won’t
need to make phone calls regarding that. However, I’m betting that I will have
to call the nurse practitioner’s office to get the test results. It’s a good
thing my telephone communication skills are polished so that I can track down
the information I need to help Alex. I realized this again later this week when
I received a letter from Medicaid stating that Alex’s benefits would be
discontinued because of my alleged “failure” to send them financial records
they needed. This put my phone skills and patience to the test once again, but
that’s a story for next week’s blog. To be continued…
“Keep on asking, and you will receive what you ask for. Keep
on seeking, and you will find. Keep on knocking, and the door will be opened to
you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone
who knocks, the door will be opened.” Matthew 7:7-8
6 comments:
I can't imagine how difficult it must be for families who don't have a diligent member to check up on things like this. Thank goodness the Pam-o-dex is at work!!!
Wow. It almost seems like a full time job could be spent on contacting Doctors (or nurse practitioners) alone! Just reading it I thought, this woman has an amazing amount of patience. God bless.
I feel you. My son is 7 and currently admitted to fix his meds. I deal with so many offices and it gets even more complicated with having to move to new places being in the military. I just found your blog and find it interesting but also heartbreaking because I feel like I'm reading my sons future. You are a strong person and I can only hope I can be like you for my son
Hi K.C. and Jen,
I really appreciate your nice notes. Organization is one of my strengths, but patience is not! I think I'm still trying to learn that virtue by going through experiences like this. ;)
Take care,
Pam
Dear Fellow Mom,
I'm so sorry you're going through struggles with your son, and I hope you can find the help and support you need for him. Each child with autism is different, and I hope that autism treatment improves so that you won't have to deal with some of the issues we have faced recently when your son is older. Thank you for your kind words; my strength comes from my faith. I'm sure you have the strength needed to help your son, too. Praying for healing for your son and comfort for you as you wait.
Take care,
Pam
What an inspiring article to read! A very good way to motivate parents to survive common autism issues.
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