Insurance woes and Jude's night

My stress level is through the roof and I am not sure why. I shouldn't be this upset over the health insurance denial because Jude still has medicaid and his nursing services are still in place. However I feel like an episode of "Snapped" without the crazy killer lady just the crazy lady. My heart keeps racing, I am exhausted, and I feel very on the edge. I guess after all this time maybe the strong has been sucked out of me. My attorney was super sweet and explained that stressing and giving up is what the companies want you to do to you and that's why we keep going through this. I thought this was my second appeal through the primary insurance but it's actually my third and I have fought with Medicaid 6 times now. My attorney said 80% of the families in situations like ours give up and don't fight anymore. Many quit and stay home to care for the children and the children wind up not getting the real care they need. He says he sees it happen all the time.That's SAD! I said before that it's a sad state of affairs when America fails to take care of their sick and elderly. We did our due diligence and paid for primary health coverage only using Medicaid as a backup. My husband has excellent group health insurance but I did find one stand out piece of information this morning. In 2014 the plan had a lifetime cap on private duty nursing but in 2015 there was no limitation listed. Interesting isn't it? My guess is Jude was nearing that cap in 2014 and now they are thinking "Oh Sh*$!". I know it's interesting to some that Jude had this coverage to begin with but again this is not an individual plan. This is a well formed major group health that specifically outlined skilled nursing coverage. Jude had been receiving this coverage consistently and then is suddenly decline even though there was a major deterioration in his health. Makes no sense. 

I think one of the reasons I am on the edge is because I know that since the primary denied then Medicaid will eventually come back and fight us as well. They will see the primary is no longer picking up any nursing hours. However, the last fight with Medicaid involved our attorney, multiple doctors speaking on Jude's behalf, an advocate office, and one irritated Hospice agency. So they may not come after us again. Still the thought of it makes me cringe. Although I am grateful for the coverage Medicaid provides, dealing with a denial is an awful experience. 

I did speak directly with the health insurance company case manager yesterday. She called to explain the decision the doctor made and our rights. I blatantly asked her who the doctor thinks will be skilled enough to care for Jude. I had her admit that a Personal Care Attendant cannot tend respiratory distress, give controlled substances, or work with a GJ tube. Her reply was, "well won't you be there". I explained I work full time but even if I didn't I am not an educated or licensed nurse which means my level of medical care would be a disservice to Jude. Her next comment was "Well you have medicaid just let them pay for it". People wonder why the government is drained. I also verified she was an RN and asked her if she knew what a GJ tube is which she replied, "of course". So I asked her what she would like a care attendant to do if it should accidentally be ripped out. She replied "well put it back in". SIGH! I explained that the GJ tube is surgically placed into the intestine and she replied "Oh yea". Brilliant that they are making these decision about Jude huh?

Last night Jude had a horrible seizure storming incident. I believe it was a build up of pain from the lung disease. This is a video of him after it was over. You can see how he is struggling to breathe and is exhausted. 

Luckily we worked to get him calmed down with the proper medications and treatment. He finally began to rest easily. 

I will get over this. I am just irritated and needing to vent and I am doing so through my outlet. Sometimes I feel I rush to judgement or anger but I guess we are each our own individual and have our own way of dealing with things. I still have no doubt this will all be handled. I think it's just a culmination of Jude's health, working full time, the insurance, bills, and more that have built up. We all reach a point of breaking every now and then.