As summer continues to roll along, so do our adventures. Our last visit to MUSC a few weeks ago confirmed several things for us. Kevin had been experiencing a cough that just wouldnt go away for several months and I had a feeling it was coming from his VNS (Vagal Nerve Stimulator). It was surgically implanted in June 2008 and the battery life is usually 6 years or so. I was correct, it was no longer operating properly and was the cause of this nagging cough. So it is now turned off, awaiting decision if we go in for surgery to replace the battery or just let it be for the time being. Since Kevin turned 18 in February, many good and not so good things have happened to us. He was declared eligible for SSI and disability and automatically received Medicaid for that. Awesome! Now all the services we have been waitlisted for these past YEARS are now coming through. However, it has also provided us with several challenges also in the fact that all our medical expenses that would have been back paid are from Texas and South Carolina where his doctors are and NC Medicaid will NOT pay anything out of state. Here lies our decision, to find someone here in NC to replace the stimulator battery (surgery) so it will be paid for or have it replaced at MUSC where we are responsible. As of now, we are in wait and see mode because other the our normal seizure activities (few good days followed by several severe seizure days) it has not changed anything by being turned off. My thought is to wait it out a little longer and see if anything drastically changes to warrant this surgery. With that being said, we watch more closely, and know now along with this since we were also told we are on the downward side of this and as the severity increases with each grand maul seizure as it has been, so does the risk for Kevin increase. We have been told before to start preparing ourselves for the one BIG one, but just how do you do that?? So we make the most of each day and pray that Kevin will be with us for the long haul and do NOT under any circumstances focus on the negative. We have many struggles now....I just had knee surgery due to my injury from protecting Kevin from a head injury (it was worth it) and financially with our increased medical expenses and having two mortgages (we lost our renters in Marks house outside of Greensboro) but we REFUSE to focus on the negative or the possibility of what COULD happen. Kevin is the Lords blessing to me as I am to him and Mark and I will do whatever is necessary to prolong his time with us, no matter what it takes....
Posted on: Tue, 15 Jul 2014 16:55:52 +0000
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