Hi Everyone,

I can honestly say that I’m more determined now than ever before to bring public awareness to the how fractured our healthcare system is. All of you are shaking your heads saying ‘oh we already know’…NO the majority of the population is unaware of the deplorable communication, lack of funding, substandard base model medical products the insurance “approves” and callousness of the professionals that are meant to support us.

My day began interviewing home care shift nurses. They were wonderful (a bright spot to the beginning of the day). Then the company approved by insurance arrived to deliver the “hospital” bed and hoyer lift. The bed is a glorified camping cot with a blow up mattress. It is so far from a “hospital” bed I’d never put them in the same category! The bed comes with (2) half side rails. If I want (4) that’s an “upgrade” and I have to pay out of pocket.

I was very upset and decided to reach out to the Senators and Congressman to update them on how the last week has gone. They were shocked at our denial process as well as the forced discharge without home nursing in place. I also reached out to Channel 10 and a few National stations. Blue Cross did call today to say they filed the external appeal with the Department of Health in Harrisburg and the decision will be rendered on Tuesday. Blue Cross will not cover Corey’s hospital stay while the appeal is being considered. Her bills for the next 5 days will be “the patients responsibility”. I am filing a complaint with the Department of Health and the PA Attorney general to report how this process has affected not only our family but thousands of others both past and present. We should not have to fight for our loved ones recovery!

This afternoon I met with two more home care agencies. The most interesting fact discovered during our interview process was they did not have a discharge date for us!
That’s right…guess we’re not moving out tomorrow! They also informed me that neither company is capable of staffing tomorrow and will have difficulty staffing until next week especially because of the holiday.

The good news, (yes, we did have a bright spot) they both have staff coverage willing to come out to New London! In addition, I also spoke with the home therapy agency for PT/OT/Speech. They too have coverage for therapy that will come out to us. That was a huge relief for me.

So now what? Tomorrow, I will go about my day as planned. I have a 2pm appeal with Medicaid in Philly for more nursing hours and then I will go to the hospital. (At this point I half expect to see all of Corey’s things packed with her in the hall waiting for me!) I will write my case manager and Dr. Long giving them the summary of the meetings and we’ll see what happens.

There’s a part of me that is SO DONE…this process is exhausting. I am convinced that the medical world makes everything extremely difficult so we just give up, give in and say ok, whatever. There has to be a better way. Communication and education for the families is either non-existent or so unhelpful it’s as if it were non-existent.

I don’t want to mislead you in thinking that our experience at Bryn Mawr has not been a good experience. On the contrary, that is why I have fought to stay; the clinical staff is the reason Corey is healing and they have been an integral reason why I have begun to heal. The nurses and techs each are caring, loving, wonderful educators. They care for both of us. The therapists are also amazing with Corey. Although, it is difficult to get them to communicate with us on a daily basis; that would be the one suggestion to change.

It is a shame that our experience is ending in the way it is. I certainly hope that the changes needed to rewrite legislation will truly happen. It will be the only way that families can move out of this crazy world of surviving and begin to function and live our lives the way we pray our loved ones will live someday.

Keep praying gang…we need all the help we can get! xoxo