We finally have some down time it seems. Even our Rocky-Dog is gonna take advantage of the down time. For months we have been trying to get the Big He’s needed equipment and assistance from the VA. It has taken daily phone calls and weekly emails to make sure that everyone was working towards the common goal of getting the Big He his ventilator. I have not been happy with the VA in our area due to the inability of many of the different departments to come together to make something simple like getting a vendor to deliver and train us on the equipment happen. While there have been some wonderful VA folks we have been working with, the process has failed for us until now. Yesterday we spent the good part of the day with VA and VA contracted vendors in and out of our home. We had our care coordinator and a representative from prosthetics. We had a contracted respiratory company and home health care company at the house. The motorized wheelchair vendor was here and measured and fitted the Big He for his chair. While using private insurance is something we do with regard to seeing our new ALS Dr in Houston (more about this later) getting the VA to get processes and procedures in place to assist those veterans that may not have the luxury of private insurance to help obtain services the VA cannot was really the main point of this exercise. The Big He was their “Beta tester” for ALS patients using the VA as primary providers for the ventilator and follow up care. I hope the system has had a correction and this point forward obtaining needed services and equipment will not be a problem. If it is, not to worry, I WILL hold their feet to the fire again and ensure my love is taken care of.
I mentioned above about seeing a new ALS Dr in Houston. We will be attending Dr. Stan’s ALS clinic at Methodist Hospital. We were blown away with the folks associated with the clinic and Dr. Stan was amazing. I could go on and on about what a great experience it was but let me just say this, for the first time in almost a year, we left the doctor hopeful and not doom and gloom like every other appointment. There is hope knowing he is getting world class care. We are being provided information before we need it. We were provided information regarding how good quality care can extend his quality of life significantly. Hope is a good thing and will go along way with how our family deals with this horrific disease. So grateful for those that suggested we go to Houston.
So as you can see, Bout Dang Time! About time we feel we can take a step back and breath. Not just for a weekend or a special trip, but we feel like there is a plan and that we now have the team behind us that we can count on regarding the Big He’s medical care. Please continue to keep our family in your prayers and that we will see some sort of management or cure soon.
All my love,