Hello, Prayers and an Update too!

Hello from the Hupe's! We hope that you are all well and enjoying Spring. We are finally emerging from the Texas "chill" and having nicer weather. We do not want to complain too much about the cold weather, because in a few weeks when we are sweltering under that famous Texas sun, we will think of those cold days fondly.:)

In the past, I have been overly optimistic(okay, in denial:)) and always assumed that things would go better than the doctors would tell us.(see? denial?:)). This has caused major upheaval in our life and we are trying to avoid that happening again. As much as we wished it were different, it is not. With this next surgery, the doctors have told us that there will be new paralysis and other functions that will be affected following this surgery. Therefore there is no way to anticipate how long or involved the recovery may be.

Stephen and I firmly believe that the ONLY doctor we trust in this surgery is the one Dr McKinley has referred me to in Dallas at Baylor. Stephen was here this past weekend, and we Prayed and talked and tried to come up with any other solution. The stakes for this next surgery to replace and correct my spinal fusion hardware are so high. The last 2 surgeries in the summer of 2012 were so complicated that I just cannot go into this next surgery without following the opinion of Dr McKinley. I am also so Blessed to have Dr McKinley. He has retired, yet he continues to help and advocate for me so much(at no cost to me. He really is amazing). It is also very scary to hear his opinions about how he sees the future of health care in this country. The debate over Obamacare is so much more that whether you are red or blue, love or hate it, we are stuck with it. As my doctors say:"Pray you do not need "health care" until the government determines what that means again and figures out how to implement it." Comforting right?

 Dr McKinley has worked all over the world in medicine for the last 40 years. He is from Dublin and did his residency at Charity Hospital in Louisiana in the 1960's. If you have never heard of this hospital and its history, it is worth a read. The stories I have heard from Dr McKinley about his time practicing medicine at Charity are truly riveting. His opinion of our new health care crisis in this country is frightening. To have a doctor tell you that he has no idea how this law will ever work or what we as taxpayers may have to endure until it ever gets sorted out is chilling.

So now we are working with hospital staff to determine the most cost effective way to have the surgery and rehab I need. Here is where things get fun;) Texas did not expand medicaid under the ACA. That is good news and bad news. The good news is that it helps with the hospital and doctors to offer a cash discount or even offer some services at no cost(see why I love Dr McKinley). Dr McKinley will also be able to "scrub in" at Baylor. This is crucial. During my last 2 surgeries, it was discovered that I have spinal cord anomalies. These are anomalies that doctors mapped out in detail during my last running EMG during surgery. In my thoracic spine, my spinal cord is actually twisted in the direction of my childhood scoliosis This is very important since I will lose more function in my lower body with this next surgery. Knowing exactly where in my spinal cord these "differences" are located is extremely important. For example, the surgeon could think that an area is:left big toe, but for me that might be: left, second toe. It is vital to protect as much function as they can. 

We are working with hospital staff to figure out if there is one of the 56!!!! plans on healthcare.gov(Texas uses the national site), a private pay plan offered here in Texas, or pay cash. The other variable is that the federal laws keep CHANGING. Last week, before yet another change in the law, we thought we were close to a solution. Even though the delay of the ACA does not deal with individual plans, the changes always include a phone call to Stephen by our agents, that says we need to make yet another change. It is absolute lunacy to me that I had a plan that worked, kept my family under one roof and covered me the way it promised, yet the government said it was "junk". If I still had that "junk" plan, I would already have had surgery in CA with my Dr and be well into recovery right now.  Welcome to: "affordable" health care. 

So please Pray that Stephen will not work himself to sickness or injury, that we will continue to make progress towards a financial agreement that allows us to move ahead with the surgery as  soon as possible  and that the kids will not be forever scarred by this non-stop drama.:)

Thank you to all who love, Pray and support us. It means the world to me. We love and miss you all and hope to see you all very soon.

Love, Emily
-- 
"Remember, to someone who has nothing,you and what you give are everything."

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