Since being discharged from the hospital, Logan has had many changes to his daily routine. He is on oxygen 24/7, requires oral, nasal, and deep suctioning as needed. He also receives vest treatments to assist with mobilizing his secretions and encouraging a cough. His oxygen saturations wax and wane. He has good days and bad and definitely becomes agitated when he can't clear his secretions. It seems as though his anxiety has increased. I pray this is temporary and just related to being in the hospital.
We have been exploring the option of having night nursing to help us during the overnights. Logan has had some struggles at night. We have a budget through the county that helps cover our nursing care. Unfortunately the budget will not fully cover increased nursing hours. We have the option of going on to a different waiver program but would lose some perks that we rely on such as a paid parent option. For those of you that don't know the process in our state/county...Logan has to be on medical assistance as our private insurance doesn't cover close to what we need to stay financially afloat. In order to have medical assistance, we have to pay a monthly parental fee that is based on our income. The more we make, the more we pay. Ideally we would like for me not to have to increase my hours at work in order to make ends meet to pay this parental fee and instead have me home more in order to provide care for our son as well as maintain the rest of our lives. The waiver helps make ends meet.
Many people have asked, doesn't your insurance cover private duty nursing? Nope. They cover home health visits meaning a once a week visit. Not good enough. It is so frustrating to pay a monthly premium from what we thought was a pretty darn good insurance company only to find out the coverages are so limited. Don't get me wrong, we are so fortunate to have insurance and appreciate everything that it gives us but come on, he is just a kid. Why do families have to fight so hard to get care for their children? Logan didn't ask to be born this way. We didn't do anything to purposefully cause this.
So, we are forced to seek help through the county. Thankfully we live where we do. We have great case managers who have helped us navigate the system every step of the way. Without Christine, Debra, and Bev we would be in financial ruins by now. I guess I am venting and doing some much needed complaining! I wish this was easier. I wish someone (the government or some really rich person) would say, "we are so sorry you are having to go through this, please let us take care of your child's medical expenses". If I was rich this would not be a problem,but Joel and I are two middle class working citizens doing the best to provide a good life for our family.
We still have options wether it be to not pursue night nursing at this time or move to a different waiver program and make some sacrifices with our time at home. Joel and I will weigh the options and make the best decision with what resources we are given.
I want you all to know that I don't put theses complaints out for all to read in order to drum up sympathy. I want everyone to understand what families like ours and so many others go through. In our communities live many children, adolescents, and adults with disabilities. We are not the only ones out there with these struggles. We are among a very special community of people.
Our time with Logan may be limited. I hate to think this way but with this most recent setback I have come to realize how fragile he really is. Every minute counts. I don't want to spend it angry and upset so thank you for listening as I work to navigate this journey!
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