Day by Day

Each day has brought so many changes in the last 6 weeks since we have been home. I have somewhat adapted to being homebound but at times it is still hard not to be able to go to the store to pick things up that we need or just get out for a little bit here and there. It was hard to do those things before where now it is not only hard, but actually impossible now without a second person. Even with a second person it is still difficult. Between all of the equipment, the preparation to go, the task of loading Megan into her wheelchair to get to the car, then getting her from the wheelchair into the car seat, reconnecting everything and then loading the wheelchair into the back you are wiped out by the time you do that and then you have to do it all over again at your destination, then again to get back in the car to go home, then again to get her in the house!!!! Everything has to be timed precisely for meds, feeds - you name it.
We have been trying to figure out this nursing thing and it is a nightmare. Everything that is a resource that you try to get help or find assistance it ends up not being anything. In between taking care of Megan I have been trying to find all this stuff. Night time is the worst because we have to make sure that Megan does not have any problems which means you can't sleep. Not really. I sleep on her bed curled up at the end like a cat or along side of her on the opposite side of the vent hoses in the crack between her and the rail. Either way I have one eye open. I miss sleep so much!!!!! I got used to some sleep in the hospital. I think subconsciously I knew there were nurses so my body just collapsed everynight when we were there and now I am back to the grind. What is most upsetting is that it is dangerous. Nobody can be on call 24 hours. Something is bound to slip by. If she vomits she can aspirate or plug her trach. You can miss that and then it can be fatal. Social Security Disability cant help with the expenses because we have too many assets - more than $2,000 worth! Duh - hopefully people who are having kids have that. Medicaid has a program called CMS but that is income based also. I submitted our info to both. SSD denied already and CMS has not responded yet. United Health Care has denied nursing and our Dubable Medical Equipment limit for the YEAR is 2,500. Vent equipment alone costs apx. $1800 per month - so we met our 1,000 deductible already and we have already exhausted our DME limit. That does not account for all of the GTube, Feeding Pump, Trachs, and all of the supplies needed to care for all of that stuff or adaptive equipment that is necessary. Big bill for us. Nursing is about $35 per hour for us to private pay which equates to over $300,000 a year for what Meg requires. Not possible. I guess that we have to become indogent to qualify for any assistance and then when all five of us are being supported by the government that will make more sense???? Then the government can come up with more programs to help people to get off of the system which my boys will need. If we could just get some assistance now then we can all remain productive and continue to plan for their future and our future, take part in the workforce, pay taxes, etc. Pat feels like we work and pay taxes to help everyone else and we cant get help. The system needs serious reform. Even if you have private insurance like we do it excludes so many things that you need at the most crucial times that are unexpected and unplanned for. Then you get caught in the gap of having exclusions on your private insurance but being overincome for any assistance on care that can and will deplete everything. If we were at a qualifying level we would have EVERYTHING Megan needs with no questions. They call it being "less forutunate". I would love for whoever deemed someone less fortunate to come here and tell me who is less fortunate than Megan. She did not create her situation, nor did we. It is not a generational thing with our family to need assistance as it is with so many others. We have acted responsibly when having children and have taken care of them and still are. I could go on and on forever. Pat sent information to our representatives in hopes of getting somewhere. Not only for us but for other families like us. We can not be the only ones caught in this gray area. And sadly you would never know it existed unless you have a medically complex child that requires extensive amounts of care. You dont see very many children with special needs in comparison to normal kids. Why would they not help the small percent of families with children like this instead of letting it get to be detremental to an entire family.
In lieu of all of these challenges Megan is doing good as far as getting stronger. She is having seizures again and Tuesday morning we are going to have an EEG to see what is going on. I am scared that the spasms are back. I cried amost all night on Wednesday night thinking of all the complications that can still come from them. She is really looking better and using her hands to explore toys which she has not done in sooooo long - since last summer. She is smiling and interacting a lot more and cries a whole lot less. Her lungs are strong and we are making her muscles stronger to work towards getting off this vent soon.
I have to go look at minivans to make transport easier with Meg. The Expedition is too high and hard to get her in and out of it and lifting the wheelchair in and out. Lower minivan should make it easier. I said I would never have a minivan, but once again life has proved to never say never! We looked into the converted minivans with the ramp and the lowered floor to make transport easy but they are so insanely priced. A used one is about 40,000. A new one is over 50,000. That is crazy!!!! And you lose so much seating... where are our other kids supposed to fit???? It is not only Megans vehicle, it has to transport a family!
It has been a long time since I have written so I am sure I am blabbering and am all over the place. Too many thoughts to write them all at once. I am started to confuse myself.
We have had great meals delivered every Monday and Wednesday night from families in our community which have helped out a lot. It has made it so we can have dinner together at least 2 nights a week. Little things like that help a lot and we have really appreciated it.
Our friends and moms have been great as usual. Thank God for them. I dont think we could make it without them - I know we couldn't. My mom went to help her boyfriend get through his chemo and radiation and I miss her a lot. It has only been 4 days and she will be gone about a month. Wow - going to be a long month for me. She helps my house run these days and is good company for me. She also tolerates me with all of the emotional ups and downs and understands why I am having them. Nobody knows you like your mommy even when you are a grown up. I hope I am as good a mom to my kids as she has been and still is to me.