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.