Insurance companies have unrealistic expectations when it comes to caring for a disabled child, especially one with the added bonus of a trach. Last week I was informed that insurance wants to drop our nursing hours from 168, which is 24/7 care, down to a shocking 98 hours per week. That's only 14 hours per day! I would obviously have to use those hours for night time care since it's physically impossible to stay up every night with Noah and then turn around and take care of Oliver during the day. When the clinical manager from the nursing company told me this I immediately called the insurance company to file an appeal. They called me back the next day and said that since I didn't get an actual denial of hours I can't file an appeal myself. The nursing company has to call and talk to the doctor that decided Noah's case and find out why they cut our hours. So that was done last week and now we wait...
Here are a few of my reasons why this is so unrealistic:
1. I cannot travel alone with Noah. Or at least, I shouldn't. I have before and if I really, really had to make it work then I could but it's not the safest or most practical way to get anywhere. I have to make sure that I am able to pull over quickly if I need to jump in the back seat to suction. Noah is not the best traveler so he usually throws a fit the whole time. Think of a dog that only gets in the car to go to the vet... Noah is the same way since we only really go to the doctor with him. I wouldn't be able to grocery shop, run errands, anything during the day. Not only that, but we only have one car which Nathan takes to work. Having a nurse here is good in case of emergency because we could just take their car to get to the doctor if we needed to.
2. I have a two-year-old. We would have to stay in the house way more than we already do if I didn't have a nurse here with Noah. Like I mentioned before, he doesn't travel well even just out onto the porch. Oliver and I would go even more crazy than we already are if we had to stay inside all day, every day. I am so mad at the nurse case manager from our insurance that called me last week. I was explaining to her my situation about having Oliver, too and she said, "Well having nurses isn't just for your convenience since you have another child." Um, excuse me? What else are they here for then? I know how to do everything that these nurses do so yes, they are here for my convenience so I can still have a life! It took every last ounce of my composure to not scream at this woman who has probably never had to take care of a disabled child in her life. I was beyond livid.
3. He has a major diagnosis now. Before when his diagnosis was merely a vocal cord thing I could understand them possibly wanting to cut our hours. Maybe he would grow out of it and start getting on track developmentally, who knew? But now that we have this big, huge, life-changing PMD diagnosis, I just don't understand why they would take away hours. Yes, he is stable but PMD is so rare and there are so many side complications that come with this disease. He is going to need a lifetime of care and support to make sure he doesn't get sick (pneumonia is a leading cause of death for PMD patients) and to make sure he is comfortable.
I guess those are my "Top 3" since I'm having a brain fart right now and can't think to add anything else. I hope y'all get my point though. I don't want to come across as whining about how hard my life is either. Honestly, it is hard but I'm living it every day so it has gotten "normal." I just wanted to point out how crazy these insurance people are when they think they can just cut our hours so drastically.
I am not the best about asking for help. It takes a lot out of me. But when it comes to Noah I know I need it. I wish with all of my being that I was able to take care of him by myself all the time. I want to be his Mommy. I want to take care of my baby. I am not at all saying that I don't want to take care of my son or that I don't know how. But physically, mentally, and emotionally, I am tired. It's only going to get harder as he gets older. He will have more appointments, more specialists, more equipment. I cannot do it by myself. I know that. I need help and I am just praying that whoever that person is that decides our case will have a heart and realize that.
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