Thursday, August 13, 2020

Beyond Frustrated!

 I got a call today from the Children's Hospital.  The kind nurse was calling to make sure I'd received a response to a voicemail I left for them on July 30th before she deleted the note since no one had marked it "done".  But no, I had not received a call back before today, no it has not been resolved, no. 

I understand there are procedures and rules. I understand there are hoops to be jumped for insurance. I understand the Endocrinology Offices moved at the beginning of the year and they are still trying to sort that. I understand that there is a pandemic.  I understand that I am just one mom trying to provide the best health care for one child.  I understand but I can't just stop...I have to keep making calls and sending emails and reaching out.  If I don't keep pushing it seems the procedures that get us the medical equipment don't proceed.

We knew in December we wanted an insulin pump and we told our care team that. Our insurance company requires 6 months post-diagnosis before a pump can be approved.

We talked about moving to the insulin pump at our 30 day follow up.

We talked about moving to the insulin pump at our 3 month follow up and we tried to get everything we needed to do done at that point but because of the pandemic they were not doing pump assessment classes but were going to start doing them virtually "soon" and they would call us.  That was the end of February. 

At the end of May we had our 6 month follow up.  We said we wanted the insulin pump.  We presented our research to our provider and explained which pump we wanted and why we had chosen that one. He said pump assessment classes would be starting virtually "soon" I pushed and grumped and he finally relented that he wasn't sure when the assessment classes would be going virtually and maybe since we had done the research we could do the class as self-study and he had a nurse send us the power point.  He said he would submit the paperwork for our pump right away and would reach out to our pump representative that day.  He also said someone would call us in 3 days to see if the power point raised any questions. We didn't receive a call but I sent him an email stating that we did the slideshow, had no further questions, and still feel we had chosen the right pump for our son at this time.

We waited through June...nothing.

In July we started emailing and calling and leaving messages and connecting with our pump representative.  The rep said they were still waiting for the initial orders from the hospital.  

At the end of July we received a call from the hospital staff with "exciting news" they were going to start virtual pump classes at the end of August and we were on their list.  I explained that we weren't waiting for a pump class and then asked if she could double check that we were moving forward.  She transferred me to voicemail where I left a message saying someone would call me back in 24 hours.  Nope.

Then today I got the call from the very kind nurse just making sure before she deleted the note that my issue had been resolved.  I'm sorry, kind nurse, that you took the brunt of my emotions this morning.  I know it isn't your fault and I tried to keep my emotions under control but you ended up having to speak to a sobbing woman who is beyond frustrated with the situation.  But I had to trust you when you said you would figure out what was going on and call me back.  After all this I had to trust you to call me back...and you did.  

There are no notes in my son's digital records about the insulin pump.  This is not uncommon because medical professionals are overwhelmed right now and it is more important that they see patients than that they type their notes into a computer.  I know they catch up eventually but it isn't helpful when notes are necessary so that others people can read them and take the next step.

I did receive a return call today from that same nurse.  The notes aren't updated in the system but are on the desk of the same person who has been gathering the necessary Dexcom Data and other paperwork and we just need a doctor's signature before the whole mess is handed off to the insulin pump company to submit to our insurance.  I'm back to feeling hopeful but I wish things didn't have to be so frustrating.  If everyone agrees a device is better care and everyone is on board for having the device and the device is covered by insurance...why must it take months and months to get everything aligned perfectly to get going?  Fingers crossed that the next person I hear from is the pump rep that paperwork is finished and they are moving on to insurance.  If I haven't heard from them by the end of next week then I'll sit down with my notebook, pen, glass of wine, and an open afternoon to make all the calls necessary to prompt things again.

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