frustrating day...

Well today has not gone as planned at all...

We got a call from the Apria dietitian asking how Ellie was doing. Well I asked her to check into our AMT Mini One button situation. Well after checking she came back and told me there were no buttons in stock and there was no ETA on when we would get a button. Right now my big concern is Ellie is prone to MRSA, strep, and staff infections and has surgery in 2 weeks. Having surgery and a strep infection is treatable. However, staff or MRSA and surgery is a VERY VERY bad combination.

Her stoma site is currently becoming very tender, inflamed, and red. This is very concerning because we are now 6 weeks in the same button and she is approved for monthly button changes to prevent serious infections. UGH!!!

So during Corbyn's apt to check his platelet levels (at 23k right now) I talked with the peds team about this. Not happy about this I was sent over to TriCare. Again not happy about the situation I was told to start looking for a new DME. Why? Well because Ellie is still using the same button she had when she had a MRSA infection and a mild staff infection. This did not set well with the peds team, TriCare, or John Hopkins. Everyone told me she "should" have been sent a replacement button (um DUH!!).

That is what I have been TRYING (over and over) to tell Apria... Unable to get online to find a DME, unable to get a hold of our case manager for Corbyn and Ellie I hopped online and found the 1-888 number for our insurance, explained the situation and told the person I had no clue who I needed to talk to but needed help ASAP. I told her I have tried to resolve our issue through Apria, worked with the DME, contacted AMT, worked with our peds team, worked with the GI team and still had no resolution and needed help at the insurance level.

At this point I was transferred to another department, some expedited something or the other department. Again described the situation, what steps I have taken to try and resolve the issue and was told I have tried everything. At this point I was told that she is indeed approved for the buttons, approved for monthly changes and there is NO reason for Apria to not be delivering us our buttons.

Ellie has been approved as of this afternoon for expedited authorization of DME change. Within 36 hours we have been approved for her to be switched to the John Hopkins Home Health Care Services Team!!!! Even better is the fact that they do have the AMT Mini One 1.7 Balloon Button in stock and can have it delivered as soon as they have the insurance approval and peds script for the DME supplies.

I have emailed the peds team the full list of DME supplies (Thank you Nana for helping me get the medical provider notebook completed).

Today I have literally had to charge my phone 2x now due to phone calls and trying to get the her buttons located and delivered. The buttons she so desperately needs like 2 months ago... I can't wait to say good by to Apria...