It was one of the busiest weeks in quite some time, made worse by spending hours on the phone working issues. Some things were resolved. Others are still being worked.
- Baclofen. This past Monday Ryan’s baclofen was reduced from 45 mcg to 30 mcg. This is the final reduction before we trial taking him off the medication entirely. The scheduled date to do this is next Monday, April 30th. The last reduction nearly didn’t happen, as there was a big mix-up with the order. Who was at fault? It turns out it was the middleman, in this case the pharmacy. The neurologist faxed the order and the nurse was ready, but the pharmacy misinterpreted the order and it was never released. I spent Monday morning running this down and, somehow, we pulled it off by mid-afternoon.
- Nursing Agency. Ugh! Double ugh! Ryan continues to feel the impact of a nurse who literally just walked off the job. It was a case of poor judgement followed by inexcusable response. The nursing agency made absolutely ZERO progress in resolving this. In fact, it is worse… if you can believe that. Sue spent every available minute last week trying to fix this. I must wait to fill you in until we get some answers, but you probably won’t believe what was done. I’m digging in my heels on this one and intend to wage a campaign that blows the lid off it. I intend to shine the bright lights on those who should be embarrassed for their behavior and decisions. I’m not sure if what was done is illegal (I’ll look into it, for sure) but it’s certainly unethical by my moral code.
- RT300 FES Equipment. Last Sunday the machine stopped working between sessions. I put calls and emails in to the company that same day, but got no response. I placed a call the very second they opened for business on Monday and was later called back by technical support. We did some troubleshooting and determined the likely cause (which turned out to be correct). They said a part would be overnighted, but we received it two days later. I swapped out the parts and had Ryan back on it immediately. The net effect was Ryan missed one day of this therapy.
- Vascular Doctor/IVC Filter. Early last month we learned that the IVC Greenfield Filter that was surgically implanted in Ryan soon after he was attacked is precarious… well, maybe. It’s sole purpose is to catch any blood clots that might break free from traveling to the heart. The concern is it has shifted and poses a risk of puncturing the inferior vena cava vein where the filter is placed (just above the junction of the large veins coming from the legs. This would be devastating and immediately life threatening. What we are wishing for is that this was the original placement and therefore has remained stable. Ryan has an appointment with a vascular doctor this week to evaluate the situation.
- Eyes. Ryan’s eyes have taken a turn for the worse and Dr. Hinkle (a.k.a., the nicest man in the world) started him on a topical antibiotic drop. They did clear up nicely, but regressed a bit overnight. Our plan is for me to send him a photograph today for him to decide the next step.
- Landscaping. Last Saturday the entire patio area was landscaped. I kid you not, it’s a sanctuary back there. People tell us it looks like a picture from Better Homes and Gardens and I agree. If you’re interested in seeing some pictures I posted, you can follow the link to my post titled Patio Landscape Photos.
- Radio Interview. I did a radio interview with WAJR, the flagship station of Morgantown, WV. For those who missed it, I will upload the interview to the website this week.
- Morgantown Fundraisers. Last week three fundraisers were held in Morgantown. The first was a 5K race that drew around seventy runners and drew media coverage that you can watch by following the link to my post Media Coverage: Morgantown Events. Then midweek another benefit was held at the Dragonfly Bar and Grill that seemed to be fairly well attended for a Wednesday night. The final event was the first “Ryan’s Rally LAX Classic” over this weekend. The organizer is using this as a precursor (working out the kinks) to what is hoped to become an annual fall event.
- Urine Culture. Another week passed and we still don’t know the results of the urine that was sent for culture on April 12th. It’s not from lack of effort on our part (i.e., another cause of being on the phone). Normally, I would assume all is well since we haven’t heard but we know this is not always the case. I’m only comforted by the fact that our home urine dip tests are completely normal. I just can’t stand the saying “no news is good news” because, in reality, no news is stressful. Here’s what I told a doctor one time when he used that old, tired cliche on me… “Say what you want, but to me the only thing that is good news is good news. No news is the absence of information, wouldn’t you agree doc”? He could only grin.