Baclofen
It took a boatload lot of time on the phone yesterday morning, but the baclofen reduction happened! Ryan was reduced to 30 mcg around three o’clock in the afternoon, taking him to the final level before stopping the medication entirely. I already set this up too. We are schedule to do this on Monday, April 30th, provided Ryan tolerates the reduction. In just two weeks!
What will happen on the 30th is all the baclofen will be pulled from his pump reservoir via a syringe. It will be flushed twice then filled with saline. The pump will deliver this at a minimal rate — I think 25 mcg — for the sole purpose of keeping it from seizing from non-use. This way if we needed to reintroduce the baclofen then we are confident that the pump is working. I have no expectation that this will be necessary, but best to err on the side of caution.
The plan is to keep the pump in place for three to six months before having it surgically removed for good.
Like every other decrease, I’m a nervous wreck. The good news is Ryan had a comfortable night and is doing well with therapy this morning, so I’m feeling a tad bit better. The first twenty-four hours are the most tense, but it takes a full seventy-two hours until I know for sure.
Nursing Situation Update
We still are faced with open shifts. In fact, there’s another one tonight. Perhaps the best way to describe this impact is to quantify it and let you decide. So here are the facts:
- Month-to-date, 23.5% of nursing shifts went uncovered. This is 48 hours.
- As of yesterday, there was no progress in back-filling for the nurse who walked off the job.
- If the situation continues, the month of April is projected to lack coverage one out-of-every three shifts (33.3%). This is 120 hours.
- I missed two benefit events this month for Ryan resulting from non-coverage.
I asked the Regional Director to provide more overtime hours, if a nurse could not be found. So I am hoping to hear back today if this was requested (and was hopefully granted) as an exception from the corporate office. It might only give a few extra shifts a month, but I’ll take what I can get at this point.
Radio Interview
I was excited to do a radio interview this morning with WAJR (Morgantown). I just got off the phone with them and I hope it went well. I’ll see what I can do about getting a file of the broadcast uploaded to the website.
Pattie says
Didn’t hear the radio show- bummed!! So very very excited about the Baclofen reduction- that is just so amazing. I’m sure it will continue to be successful.
The nursing situation- we are going through a similar situation ourselves. I don’t get how these agencies just do not have back- up. The home health nursing leaves ALOT to be desired. It’s very disappointing.
Paula says
“Lauren” — you sound very young and naive. I want you to stop what you’re doing and google “minimally conscious state” and read about every case you find. Pay special attention to the cases in which a young person was attacked and suffered traumatic brain injury. Go back and watch the video of Ryan being attacked by May and Vantrease. Imagine 880 days and counting of nursing and tending to a loved one who is totally and completely dependent on you for everything. Both of those young men are guilty of causing this nightmare, and the people who stood by and watched it happen are just as guilty. I’m sure you’ve heard the cliche, the only thing evil needs to succeed is for good people to do nothing. They did nothing to stop the savage and horrific injuries inflicted upon Ryan.
No one deserves that, Lauren.
Kukie says
Dear Ken,
I am not from anywhere nearby you. In fact I’m almost to the other side of the world (Malaysia). However, I follow your blog everyday without fail just to check on updates with Ryan and prays so that any positive changes will occur. Please allow me to say a few things to Lauren C. and anyone else who thinks like her.
Lauren. C,
It is easy when people make mistakes, they do not want to admit it. Fights do happen between teenagers, but how can you ever justify such a cruel act where the boy is hit so badly that he is suffering each and every moment. I praise Ryan for his brave attempt to recover. Such a fighter is rarely seen. For those who have committed crimes, If you cant offer any help, then just dont bother to drop by to visit this blog. Why are you so interested to read this blog when you dont even bother to offer help. IF YOU CANT OFFER HELP, DO NOT CRITICIZE.
Sorry Ken but Im just so angry when people dont actually appreciate other person’s effort.
Remember I may not be physically available to support you all but my prayers will always be with Ryan all the way from the East part of the world. Please do tell Ryan that he has found a new friend from East.
Take Care
Colleen says
Lauren C. – spelling and grammar aside, get a grip. You must live under the same rock as Austin and his family.
Carla says
Lauren C – Really? Did it make you feel better to kick Ken Diviney when he is down too? It’s quite obvious you are a family member or friend of Austin Vantrease. (And I’m sure Mr. Diviney can pinpoint your location with his handy dandy I.P. address locator to prove my point).
Jennifer hit the nail on the head when she said the only comment that is truthful is that the other attacker didn’t get enough jail time. Guess what? Neither did Austin Vantrease!
What I don’t get is why the folks in your camp aren’t bending over BACKWARDS to help the Diviney family. I couldn’t sleep at night if my child were responsible for such a crime. Furthermore, I wouldn’t rest until I tried everything in my power to make it RIGHT. Have you? That you have the temerity to say such things to Ryan’s family is reprehensible. So this begs the question: How do YOU sleep at night?
ryansrally.org says
Yep, from Newark, DE. Specifically, latitude 39.67XXX, longitude -75.70XXX (I masked the last three digits in each so no one went looking for them).
Sheesh… what I have to deal with!
Jennifer says
Please forgive me, Mr. Diviney, if I am speaking out of turn, but I simply felt compelled to respond to “Lauren”. Also, please correct anything that is wrong with my post.
I am simply amazed at what she writes. The only thing I can agree with is that it is a shame that one of the thugs got off with a misdemeanor and 5 months in jail.
“A kid who made a mere mistake…” What “mistake” are you referring to? Attacking a fellow human being? Kicking an unconsious man in the head as if it were a football? Hiding and running away? Apparently, my definition of a mistake is vastly different from yours.
“…I’m sure ur son is just as capable as doing.” From the surveillance footage, Ryan was trying to disengage. He was pursued.
“We all know who is at fault…” Apparently, not all of us. You seem to still be in the dark on this one.
“I hope you can sleep at night…” You must not read this blog or even the entry on which you commented. The Diviney’s have not had a good night’s sleep since 2009. Because of the actions of the “kid” you refer too, as well as others, they cannot sleep because they must care for their son 24/7 and pick up the slack when hired professionals drop the ball.
I just don’t understand what you look to accomplish by leaving such a comment on this blog. If you felt compelled to say anything (especially if you are related to those who have been convicted) it should have been “I’m sorry for the evil your son encountered”. Or how about donating toward the everyday expenses that it takes to care for Ryan?
Mr. Diviney, I know I have never met your family but I read your blog everyday and rejoice in Ryan’s accomplishments, no matter how small. I am sorry on their behalf that you have to waste even a moment of your time/energy reading insane comments. Praying for your family everyday.
Lauren C. says
It’s a shame u are targeting a person whom is not responsible for the condition that your kid is in now. A kid who made a mere mistake that I’m sure ur son is just as capable as doing. We all know who is at fault for the way your child is now, and that person is surely NOT Austin. I hope you can sleep at night knowing a kid who is NOT the one who put your son in a coma, is in jail. And the real man that committed the crime, has gotten off with a misdemeanor and nothing but 5 months of jail time (if that). Justice needs to be served, it’s just a shame you chose the wrong boy to serve it too.
ryansrally.org says
I see you’re from Newark, DE (just off Christiana Pkwy/E. Chestnut Hill Rd)… the hometown of the attackers. Both Austin Vantrease and Jonathan May inflicted permanent damage and both got off too lightly.
The Colangelis says
Great news on the baclofen reduction. Please try to get the radio interview file; would love to listen to the interview.
Carla Liberty says
Hey Ken –
Glad to hear the baclofen reduction is going smoothly so far. Were you able to review the list of nursing agencies to see if Maxim was on the list of approved ones? If you can’t find an agency will they allow RN’s or LPN’s that want to pick up extra hours on the outside? Many of us know nurses and maybe one might need some extra money?
I hate that this is happening to you…
Love/prayers,
carla
Paula says
Wow, I’m ticked. Can you please keep us updated on the nursing situation? I can’t believe it. Praying for a positive resolution to this.
Looking forward to hearing your radio broadcast as soon as you can post it here. I’m grateful to the good people of Morgantown (and elsewhere) who continue to rally for Ryan. Thank you from my heart to all who help — you are making a meaningful difference in a young man’s life!!
Ken, way to go for getting Ryan’s baclofen decreased. I’m giving you all the credit for this because you deserve it!! Praying for another problem free reduction.
Thinking of you and Ryan, and praying you have a good day together.
Love, hugs, hope, prayers — especially for that special nurse who will show Ryan all the caring and attention he deserves.
Paula
Colleen says
I listened to the Radio interview this morning and once again, brought to tears by the support and admiration ‘EVERYONE’ has for your family and especially for Ryan. Yes, Ryan is relevant and in so many ways. This is a true testament to you and how people feel about your Son. I’m crushed that he is not doing what he should be doing, but the simple fact that no one has forgotten him speaks volumes. You should be so proud Ken and Sue. I hope Ryan has a good day and the reduction is successful.
Ryan's Rally: We Got This via Facebook says
I requested the audio file. I’ll upload it to the website when I get it.
Jo Hobbs via Facebook says
Would like to hear again, please and thank you. You’re the best!
Jo says
Hoping the Baclofen reduction goes well for Ryan, and I will pray about this. The nursing situation is very worrisome. All the extra waking hours for you can’t be good for your health. Hope this is resolved successfully.
I listened to the live radio interview and hope many others did also. I think these interviews help keep Ryan’s name and situation out there.
I continued to listen to WAJR as a caller reported another beating victim in Morgantown who is in ICU. The caller says it happens a lot around Morgantown. I was shocked to hear this. I disagree with the
DJ when he says that no one has any business out at 2 or 3 in the morning anyway. What? !! That’s similar to the attitude that the way women dress causes them to get raped! I’m pretty pi@#ed right now — more later when I cool off!
Jo says
Hope Ryan is doing well as the day progresses and that the nurse situation is better.
I am not sure I understand why the DJ remarked as he did. Not really thinking, I suppose, but many of us, including me, are out until the wee hours sometimes, even for a trip to the all-night pharmacy and other reasons too numerous to list. Even my donut shop is open late 😉 We should all be safe — period — no matter what time of day or night we are on the street! Live radio requires quick thinking and a great amount of responsibility. I know I don’t have to tell him this. I forgive him, and I thank him for the interview with you, Ken. SHSP always
Gail Doyle says
ken, Once again,hoping reduction goes well.Glad it came through. Hope a solution to nursing problem is worked out soon too. Heard your interview loud and clear, very good! You all have a smooth day and always here … Love Gail