Today while I was at lunch I received a call from our nursing agency. They informed me that after the peer to peer review with Jude's hospice doctor and a review of additional nursing notes the health insurance company still decided to deny Jude's case for in home nursing care. When I heard those words I just felt defeated and sick to my stomach. I am not sure what caused those feelings but I am still very tired and I just want to go home today. Here is the situation...........this is our primary insurance that we pay into so therefore Jude's medicaid backup will still pick up his nursing hours. However, this is frustrating and I try to be a person of good values and this isn't right. I feel in my gut that this must happen frequently to other families and they probably don't have the strength to fight so they throw up their hands and let Medicaid pick up the charges. Either that or they put their families in a compromised situation because they feel they cannot fight the corporate health market. This makes me sad for those families.
Jude was admitted to nursing on our primary plan years ago. In the past twelve months his condition has continued to deteriorate. So I have to ask why there was a sudden change in the level of care he needs according to the health insurance company if his condition has only worsened? I cannot get any answers. In fact I called again today when I heard the news and got a live nurse who was so upset about the denial she sent me to a supervisors voicemail. All she kept saying was, "Oh I am just so sorry". I understand we are lucky that our primary pays for in home nursing but outlined in their explanation of coverage's it is offered. Therefore Jude should be able to obtain the coverage his deserves and we pay for. Jude's case is so complicated now that I am not sure who the insurance company think would be qualified to care for him. I don't post that many pictures anymore or share video's because Jude just doesn't look well anymore. However, I did explain to the nurses that I will be filming him the next few days. That way I have on hand video of his complicated condition and needs. I just don't understand how much more medical necessity is required? If a child is on oxygen 24/7, requires frequent suctioning due to choking and aspiration, has a continuous feed on through a G/J, needs rescue from respiratory distress with controlled substances, needs seizure control and more...........just shaking my head.
Along with this I also received a denial on Jude's CPT shaker vest, another authorization for his formula because something wasn't sent in right, and more. Being a special needs mom is hard but it just shouldn't be so complicated or stressful. I feel like companies make your life more stressful and it's just not right. However it is a part of the process and you learn to walk the path the best you can.
Jude had a very difficult time keeping his oxygen up last night. Throughout the evening I turned his monitors off and then nurse Candice ended up turning them off too. When I checked in today he was still having difficulties but was finally asleep. Jude looks very week to me but he keeps giving me little smiles and that is super sweet.