Today marks the three-month anniversary since Ryan stopped receiving baclofen from his surgically implanted abdominal pump. More precisely, it happen at 11:23 AM that day. After an aggressive and nerve-racking ten-month schedule to reduce his dosage it finally happened. In total, Ryan was on baclofen for two years and four months.
If you remember, I set a window of three to six months after we stopped the baclofen to get the pump removed from his body. Well, I can see no reason not to do this as soon as possible. Ryan clearly doesn’t need it and getting another piece of hardware removed from him can only be positive. It will be wonderful to look at his stomach and not see a huge bulge, like he swallowed a comically-sized hockey puck and it’s pushing its way through the colon.
So today (like every other day, I suppose), Sue and I will be on the phone talking to hospitals, doctors, and insurance. I’ll call the Neurological Surgeon from Morristown, NJ — who put it in — to see if she has a recommendation on who should take it out from our area. I’ll also ask IBRF for a referral. I even check with Kessler Institute; where Ryan spent five months in rehabilitation.
I was just about to say that at least we wouldn’t be talking to an attorney today about the pending civil case, but I then remembered we must. What can I say? It’s a typical day of piles of paperwork, back-to-back phone calls, and monotonous red tape. Sue takes the brunt of this, spending every available weekday (and many weekend) minute dealing with one issue or another. Her morning and evening commutes are consumed with working through these nightmarish problems. Evening are spent on the computer and phone.
She does all this and works hard at a career that provides for our family, never sacrificing either for the other. She does both superbly and I seldom hear her complain. That’s not to say it’s not noticeable and it’s not beating her down. She doesn’t so much drift off to sleep each night as collapse from exhaustion and frustration. Oh yes, I hold Ryan’s attackers accountable for this too.
This is a terrible life that was aggressively forced on our family. It never lets up. It’s intense and there’s never a day off for either of us. Saying Sue takes a “vacation day” is a joke. Nothing short of mocking. Her days off are used for Ryan’s surgeries, appointments, legal battles, or being able to put together some uninterrupted time to plow through a particularly difficult problem. How does she do it?
It’s an eternal marathon… run at a flat-out sprint speed.