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.
Those are the heavy-hitters for the week. They are a mix of resolution, work-in-progress, and people/companies being complete jerks. No matter the status or outcome, it really shouldn’t be this difficult and frustrating. Listen up people, as a society we must be concerned because it will only get worse if left unchecked. We should all make the personal investment to fix this now or pay with our health later. The reality is most won’t, until it touches them.
Like all issues that touch us, we will plow through them.
Some have heard me use my football metaphor on how I approach issues (or more accurately, life) and this is never more true than when it comes to Ryan. I first used this when Ryan was in Shepherd Center (Atlanta) in late 2009 when I demanded a meeting with the Medical Director. It goes something like this: I expect to advance the ball on every down. First downs simply mean I haven’t hit pay dirt. I don’t punt. I don’t take a knee. I don’t run out the clock. I don’t settle for field goals. Are you on my team or not?
The Colangelis says
Good luck in your dispute with organizations who have oversight of the nursing company. Remind yourself to stay patient, diligent, and professional. One loses credibility with lack of control. This industry (personal health care) has frustrated my family when my mother-in-law (now deceased) was in a nursing home. While some nurses were good, there were others who were poor caregivers. The fact that it’s not a high paying profession coupled with the high demand that exists for aging babyboomers, we have an environment where quality of service is not consistent. I hope your successful in meeting with the nursing companies and getting a quality person to assist with care for Ryan. You are extremely smart and dedicated. Plan your approach, keep an even keel, and stay professional. We will be praying for you.
Hi Ken, just “fyi” — did you see that this item:
Major LubriFresh P.M. Sterile Artificial Tears Ointment 3.5gm 12pk
on Ryan’s Wish List says it’s currently unavailable and they don’t know when or if it will be in stock?
Paula, I did, but appreciate you looking out for this. With all that is going down with the nursing agency I was not able to find a suitable replacement just yet. I’ll tend to this right now by pulling it from the list and seeing if Sue can run it down in some different drug stores.
Keri Dezell says
I’m in! I’m on it! and I believe in RYAN’S TEAM and it’s Head Coaches! Consider my contract to have no expiration date!
I will continue to pray for Ryan’s progression;for you and Sue’s strength, resolve & peace of mind; and that all “nonsensical” issues are resolved ASAP!!!!
With love and in prayer Always, Forever and Until,
Keri, My Frankie and Family
GOOOOO TEAM DIVINEY GOOOOOOOO!!!!!!!
We dealt with home health aides — both private duty and through agencies — from 1983 to 2011. So what’s that? Twenty-eight years? I could write a book.
Now these weren’t usually nurses, mind you, these were aides — often CNAs (certified nursing assistants) — but I think much of what I learned applies to both.
If I *were* to write a book, my bottom line would be . . .
No, I’m going to stop here. I’ve got to. I’ve been trying to articulate my bottom line for almost an hour and it’s depressing.
“We should all make the personal investment to fix this now or pay with our health later. The reality is most won’t, until it touches them.”
Unfortunately you are spot on about this, Ken. Most people don’t realize that the chances are very good that at some point in their lives, they may need the services of one of these agencies. Right now such companies are in the “driver’s seat,” translation – we are at their mercy. The need for their services far exceeds the number of trained health care professionals available. The result is some clients will receive either substandard care or no care at all due to an agency’s poor policies/management/ethics. And, as usual, those who are the among most vulnerable will suffer the most.
Thank God you and Sue have the tenacity and strength to fight back. A lot of people don’t have the will or the energy to do it. But if people don’t speak up and insist on being given the best standard of care, nothing is going to change. Ken, I’m sorry you have to tackle this, but I know your resolve will get the ball rolling. Ryan deserves far better treatment and fact about it so do you and Sue.
“I expect to advance the ball on every down. First downs simply mean I haven’t hit pay dirt. I don’t punt. I don’t take a knee. I don’t run out the clock. I don’t settle for field goals. Are you on my team or not?”
Praying for a positive resolution to finding a top notch nurse for Ryan. Thinking of your family and praying for God to sustain you as you continue to surmount these obstacles.
As usual, well stated!
Sorry this is so long, but it is in the interest of helping others as well as Ryan. I notice that Ryan’s eyes are red and question whether it is related to artificial tears.
Please read: http://www.ncbi.nlm.nih.gov/pubmed/20302969
And this, which I know is long but may provide answers. Well, what can I say? I told Ryan this is a good day for reading. LOL
(1) Note about Benzalkonium chloride:
Chronic dry eye patients are generally advised to avoid frequent use of any over-the-counter products preserved with benzalkonium chloride, because of the damage it can cause to the tear film and ocular surface.
With respect to artificial tears, few with BAK remain on the market because most doctors advise against its use and alternatives are readily available, including eyedrops with gentler preservatives and preservative-free unit-dose eyedrops.
With respect to prescription eyedrops, the situation is much more problematic because alternatives may not be readily available and the drug may be medically necessary. It is our hope that the ophthalmic pharmaceuticals will become more sensitive to this need and produce preservative-free versions of key topical ophthalmic preparations.
If you have been prescribed a drug containing BAK and expect to use it for more than a week, please discuss with your doctor whether there is a preservative-free version of the drug or whether there is an alternative equally effective drug without BAK that could be used to treat your condition.
(2) Note about “disappearing” preservatives:
There are several “disappearing” preservatives used popular in artificial tear products, including Purite (in Refresh products and prescription drugs by Allergan), GenAqua (in the Genteal products), and sodium perborate (in TheraTears).
The general concept with preservatives of this type is that the eyedrops are effectively preserved in the bottle but on contact with the eye (or on light exposure) the preservative is supposed to dissipate into basically oxygen and water.
While unquestionably safer than BAK-containing drops, tears with “disappearing” preservatives should not be considered equivalent to unpreserved tears. Some people have low tolerance for these preservatives. There is also some debate as to whether the “disappearing” action takes place as effectively on a very dry eye as on a healthy tear film.
Our advice: Discuss with your doctor whether regular use of products with GenAqua is acceptable for you and if so what is the maximum applications per day your doctor is comfortable with.
I tried to check Ryan’s Wish List to see if he uses the tears with the “disappearing” preservatives, but it didn’t come up.
I’ll check into this.
I found your address and Priority Mail envelope going out tomorrow.
My mother used to say “I’m so mad I could chew nails and spit battleships.” I can understand part of your frustrations as I am sure most can who have been in the “medical system” for any length of time. I am sure we all have our stories of negligence and down right unethical practices. Based on what I have seen here in California, much of the in home services are fraudulent and even send people to do highly skilled procedures posing as nurses who are not. Anyway, I am glad you are pursuing this and I am THANKFUL that you have some of the people you do who DO care about Ryan like the precious eye doctor. Few and far between in the practice of medicine today.
Keep moving the ball down the field. I’m one of many in the stands cheering you all on!
Gail Doyle says
Ken, Thanks again for updates,and hope Ryan’s eyes are better.Seems Ryan is doing okay thank goodness,so sorry for the other hassles you’ve been going through no fault of your own…Come on nursing companies ,just do your job!!!
Great that Ryan will be off baclofen completely in a week or so and no bad side effects ,let’s get some good effects now!
Sounds like fund raisers were a BIG success,,Yea!!! And more to come. Landscaping and patio is beautiful and a nice retreat from being inside all the time .I certainly am on your team, only settle for the big one (touchdown),that’s the way to win, and win you will Ken,Sue and Ryan..Good luck with nursing situation.There never should have been a problem to begin with. Hoping you all have a peaceful day ..Always here Love Gail
Ken, have you contacted the Virginia State Nursing Board and told them your story. Not sure if a complaint can be registered against the license of the nurse who originated your troubles. I think the complaint might be abandonment
of duties. Anyway there might be something they could do. I think if a nurse walks off it’s a legal issue.
I have taken care of plenty of people in my years of nursing I did not like or agree with, but would never leave them high and dry without coverage. This person is not needed in the profession if she can walk away from your family at this time of extreme need. Make sure others are aware of her so they are a victim of her bad judgement.
Anna, I believe you hit on one (but certainly not all) of the avenues I’ll likely take. Any agency that has oversight should expect to be notified. Still, I’m giving this nurse and the nursing agency EVERY opportunity to make this right.