Its been a whirlwind since we returned home from Hershey. I just cant seem to catch up from our 3 weeks away from home or Talias subsequent weekend soccer tournaments . Insurance has made us switch over from night nurses to night home health aides, and while Bayada is trying to fill in slots, the still open nights have me on the couch. No sleep occurs on those nights...and I counted 5 out of the last 10 a few days ago....so I have been walking around in a daze, quite zombie-like. Back home means back home at Heinz Rehab. Although I miss the twice a day, every day, therapies of inpatient stay, our therapists are working hard to continue the progress from Hershey at our bi-weekly visits using different equipment trying to isolate different muscles. Communication between our doctor at Hershey and our therapists at home is awesome, and Im so grateful that all care enough about Damon to work so well together. What came out of our 3 week inpatient stay was that we need to take the next step in order to see more progress. We need to calm down Damons overactive muscles in his legs in order to activate the underactive muscles that cant fire separately because the overactive muscles keep taking over. Forgive me, medical professionals. Thats the only way I understand it...I know its more complicated than that. The way we can make this happen is by implanting a small pump in Damons side, with a catheter under his skin that stretches back into his spine. The pump will administer continual drips of medicine into his spine that will hopefully calm down some of his muscles. All muscles will feel more relaxed, but weaker, and well need to take a few steps backward from where we are now to kind of start over and strengthen everything together. With him not having to continually fight the toned muscles, the hope is that movement will come easier. Surgery is scheduled for Tuesday, June 17. Of course if this is the way to go, this is the way we have to go. But…..I can’t help but look back at all those other surgeries…were there 15 total? Was it 10? Four or five in Hershey, alone, resulting from the infected shunt placed in Philly that we found out wasn’t even needed in the first place. It’s scary. Another foreign body placed inside Damon that can easily become infected as well. As the neurosurgeon went over the risks and benefits, I was reminded of the TV commercials that list 1,000 reasons not to take the medicines they’re advertising for you to take. Of course the percentages of anything happening are low….but so was the percentage of the shunt becoming infected over 2 years and 4 or 5 surgeries ago. But we need to take this next step so that we can help Damon take some steps. We want him to walk. We want to be comfortable. We want him back to Damon. We want everything. I’m still fighting insurance on the standing wheelchair. The original application which was denied is under appeal….in the first round, the insurance company wouldn’t budge, now saying “…..it will not help the member achieve or maintain maximum functional capacity in performing daily activities.” I have to repeat that. “It will not help the member achieve or maintain maximum functional capacity in performing daily activities.” Seriously? Please come meet Damon and see what this chair can do for him in person in so many aspects of his daily life! Who else is a more perfect candidate for this chair? But we are pressing onward, now re submitting the request, now using the team from Hershey and their distributor. We demo-ed the chair again while we were there and everyone felt that it was a perfect fit for Damon’s needs. We now have 2 different doctors, 2 different sets of clinicians from 2 different facilities all on the same page. The Hershey team is pulling out all the stops, rolling up their sleeves, and fighting to get Damon this chair. And of course, the Heinz team is on the same page. My fingers are still crossed. No one is giving up. There you have it…. our last few weeks wrapped up in not a few words. Fighting insurance. Fighting lack of sleep. Fighting to progress. And not giving up on any front. Much love
Posted on: Sun, 08 Jun 2014 12:22:35 +0000
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