Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.

Wednesday, August 22, 2012

New Nutropin Nuspin Nurse

OK, so I told you about the new injection pen we will now be using each night to give Nicholas his nightly GH (growth hormone) shot. Click here to read.

Well, the box containing his new monthly shots arrived unannounced at our front door....while we were on vacation! BTW, this medication needs to be refrigerated or it will become non usable.

I called our pharmacy to let them know the material had been shipped without our authorization, and since we were on vacation, it is now unusable. They quickly apologized and arranged for UPS  to pick up the box. In the meantime, we arranged to have a new shipment sent to us directly. The pharmacy called the Nutropin manufacturer to let them know we were receiving the new "stuff" and required training on how to use the new device.

The Nutropin folks called me immediately to let me know they were arranging for a Visiting Nurse to come to our house. So far, so good.

The box arrived on schedule but we did not hear from any Visiting Nurse.
I called the folks at Nutropin. They assured me they would look into it.

Days passed and we were running low on our old stuff. The training was becoming critical.

I received a call from Nutropin folks on Thursday saying they were waiting for a nurse to "approve" the request. Waiting for an approval, I asked? What do I do in the meantime I asked? How long does it take to "approve" a request?

Friday came......no nurse?

Called Nutropin folks again.

They expect the nurse to call today.

Guess what?

You're right....no call, no nurse and we have used the last remaining medicine.

I now have a new device filled with a medication my son needs to grow properly and no instruction on how to use it.

Of course it is now the weekend and I cannot reach anyone at Nutropin.

I leave a message on our Case Manager's voicemail.

I leave a message on their General voicemail.

No response all weekend.

No response on Monday.

I call our Case Manager and ask to speak to her Manager.

I politely explain that I have been a customer of theirs for 10 years.

I explain the situation and request that the President of their organization be informed of what has happened to us. I explain that I do not want any other family of a child with PWS to go through this horrible charade. I told her that I would argue that providing a family with new medication and then no means to give it to their child is a form of cruel and unusual punishment.

The Manager calls me back and explains that a nurse has been contacted and once again we need to wait for them to confirm.

I ask this Manager what I am to do if this nurse is also unavailable. She says she does not know. I ask her very politely to have a back up plan in case this nurse is also unreachable.

Within 20 minutes, I receive a call from the Injection Nurse. She explains that this is the first time she has been contacted and will gladly be at our home tomorrow evening to provide instruction.


These are the type of "medication madness issues" that make our difficult life even more frustrating.

I am happy to report that the nurse did arrive last night.

She was great.

I am now officially "trained" on the Nutropin Nuspin device.
I must say this "next generation" device is very "high tech" twirling and whirling and delivering medication in a precise dose.

Nicholas was a trouper and very patient with Mom's clumsiness.

"That didn't hurt at all!" he said happily thanking the new nurse for helping us.

As for me....I think I need a good stiff drink (or two)!

p.s. The "expired" box of warm Nutropin is still on my step waiting for a UPS pick-up. It has been over a week. How long do you think it will take before I need to make another phone call?


The Henrys said...

Thank goodness someone finally listened to you and did something.

You are an incredible mother Lisa, not only in your never ending care for your children, but in your disire to make it so that no other PWS family has to have this same experience.

Much love and admiration to you...

nila krishnan said...

Visiting Nurses

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