It’s one of those times where a general update is probably necessary. The fact is, for the past week or so my focus was elsewhere. I owe it to you to bring myself back to base.
- Social Services. I met with a representative last Thursday morning in my home. In total, the visit lasted seventy minutes, but much of it was exploring ways that they could be an advocate for Ryan (I asked them to do this). I held Ryan up as the gold standard of care and the case worker seemed to agree (but they never really outright say). I showed everything, giving a detailed tour. We discussed how any baseless future assertions might be most efficiently dealt with. I expect to hear that the case is “unfounded” this week.
- Baclofen Reduction. Another reduction is happening today (18.1%, from 109.9 mcg to 90 mcg). Ryan began the calendar year at 155 mcg, so this means he is at a 42% reduction for 2012. Since last year at this time his dosage is reduced and incredible 77.5% (was at 400 mcg). Breaking the 100 mcg threshold is a big deal to me. I just hope he tolerates it and we can continue the march to stopping it altogether… eventually removing the pump for good.
- UTI Resolved. The urinary tract infection from January is gone. At least for now, anyhow. His urine is continuing to show the absence of leukocytes and nitrites, meaning a UTI is not present. We are still working on getting him in for a urological consult. You might be surprised at how many doctors (from across all disciplines) are not willing to take him as a patient.
- Femur. The surgery required three small incisions (from a half-inch to two-inches) to place the rod and screws. These are healing nicely. The staples were removed last Friday, allowing us to get him showering again. The only remaining action on this is to take Ryan for a follow-up visit with the orthopedic doctor.
- Patio. I’m still hoping the contractors will come back to put on some finishing touches. I’m reluctant to ask them because they did so much for us already. The Jacuzzi needs placed (it’s still in the yard) and the slope needs reduced. The grass seed never really took, so I think I’ll just buy sod when the weather gets a bit warmer.
- Bone Density/Dexascan. I’m trying to combine this in the same outing as the urologist. Some might remember we had this test done on Ryan a year ago and it showed some deterioration, but they felt it could be remedied through supplements (mainly calcium). I suspect this recovery didn’t happen and we might need to revisit ways to improve/maintain Ryan’s bone health. Adding more calcium is an option, but this makes him more susceptible to kidney stones. Perhaps the femur fracture might help in the long run, as we might not have known (until it was too late) that Ryan’s bone density is compromised.
- Comments. Someone suggested no longer allowing comments on my posts. You can read the full comment at the bottom of yesterday’s post, Judge Not?. Hell, I thought yesterday’s comments were amazing! Anyhow, there is no way I will stop this. For one, if someone doesn’t like them… well, I suppose the easiest thing to do is just not read them. Personally, I draw inspiration from them. They help me cope. They confirm my emotions. Few things motivate me more than others who share my ire. Usually, you express my thoughts better than I do! Another thing, I learn a lot from the comments. Every day you, as a group, confirm your “smarty pants” status. Although I’m no longer a religious man, I don’t mind the biblical and faith-based references. I’m not opposed to religion, I just don’t believe in it anymore. That in no way means the bible doesn’t hold valuable lessons for me. The parables apply just as much to those of no faith, just in a different context. Finally, comments allow the hateful to self-expose. They just can’t stop themselves. This, in turn, drives up readership and time spent on the website. The result is a more favorable ranking in the search engines.
- Civil Suit. It’s still in the “discovery” phase. My goal remains… to hold the “dirty half-dozen” accountable. The truth is, Ryan will likely not ever see a cent from the recovery. Any money awarded will be dealt out to others first. Sadly, the insurance company could probably claim it all, as they paid millions already. Remember, we are dealing with the scum of society in these thugs (and their families). Just getting them to pay at all is questionable. Hell, according to the Delaware Courts, Alex Woods hasn’t even paid a $121.60 traffic ticket he has. It looks like these thugs might spend their lives with liens over their heads.
So, again, thank you for listening to me. I know you tolerate my randomness when posting from day-to-day. I suppose, in some ways, it keeps this website interesting. But, I realize it might be frustrating too. My mind never really shuts off and what I write about is what I am usually thinking about when I sit down. If you find this annoying, just image being me… the person who lives it.
Nancy Tawney says
Glad to hear that Ryan is doing better! UTI’s are so hard to treat and keep them from recurring. Also i cannot believe that a Dr. would be afraid to take care of Ryan! I believe that is what they go to school for and take an oath,to take care of patients. That just is so unbelievable. I hope that you find a good urologist soon. Take care.
The Colangelis says
Thanks for the update and glad to hear of Ryans’ progress on his urinary tract clearing up and successful Baclofen Reduction. Recognize you say you are no longer a religous man but just want you to know many, many of us pray for you and Ryan daily and I hope someday you regain your faith. God Bless you.
i read your posts daily. as you recall, my son is in a similar situation as ryan from a random car accident….a tire blowout. i understand how you feel. we too are involved with the IBRF. you haven’t written about them in a bit. wanted to know what types of things are doing with them and finding valuable.
Gail Doyle says
Ken, Thank you for all the updates and hoping Baclofen reduction goes well. You could never be annoying, in fact when Ryan is better I hope you keep writing! So glad leg is healing and ,honestly , its so unbelievable no Dr. is willing to look into Ryan’s UTI infections. Maybe a good one will come along soon. Also think most of comments are very interesting..Thinking of you all and always here <3 Gail
Lori Cadmus says
Never, never annoying!! I so appreciate your raw honesty and hope that you will continue to tell us, your faithful and caring readers, what is really going on with Ryan, with you, including what you think and feel. I pray for you and Sue, Ryan and Kari daily, and want to know what you need…emotionally and physically. Keep on!
As a former lacrosse coach, I have gotten myself hooked on reading about the George Huguely V murder case which is currently in its second week of trial. Ken I always think about you and Ryan when I read the articles. And I am always glad for you that your son is alive. How I am looking forward to the day when those SOBs who did this to Ryan get their come uppance. We carry your anger too!
You have mentioned before that the urologists don’t want to take Ryan on as a patient. What is their problem? Why do you think doctors so reluctant?
His condition makes them uncomfortable. They are afraid.
That’s a real shame.
Hi Ken, I didn’t know that doctors could refuse to take a patient — then I talked with a good friend of mine who told me that her Dad’s doc of 30 years “fired” him as a patient — I guess because he was on medicare, I don’t know, but it’s very troubling. Not that I ever want a doctor who didn’t want me as a patient, but geez — anyway, I am praying you find just the right doctors for Ryan. You’ve got an excellent group so far, we just need to add to them.
I’m going to keep hoping and praying that your family will recieve some compensation from the civil suit. My opinion about how well the justice system works is that — it often seems like the punishment doesn’t fit the crime (i.e. as in Ryan’s case) — and that victims remain victimized. Tbough we all know there is no amount of money that can make this situation right, I believe your family deserves to be awarded ample money not just for medical costs but for the enormous emotional toll the attack on Ryan has taken.
Praying you and Ryan have a positive day together. Please keep us posted how the baclofen reduction goes. It’s wonderful how well Ryan has done with the reductions so far.
Sending love, prayers, and faith, cuz faith gives me hope and I’ll never stop hoping for Ryan.
I’m usually very quiet and don’t post anything. But I do keep up with your blog, Ken, and I want you to know that I think of you and your family often. You are always in my prayers. I may be just driving along in the car when for no reason, I’ll think of you all and the heartbreak that has become your life. I can’t walk our dog past your house without saying a little prayer for Ryan. I have a son that is a sophomore in college, and I can’t even imagine that place that you live on a daily basis, that place of deep loss of what was and yearning for what could have been. What you are doing for your son is love in the truest, most raw sense of the word. You have no other choice. On this Valentine’s Day, remember that many hearts are aching for you, Sue, Kari, and Ryan. Much love and many prayers are always with you.
Oh, dang! That’s me! Boring, wordy, preachy and probably needy as well! Thank you, dear Ken, for putting up with me! You are so dear to us, that we’re going to allow you to choose our nursing home!
Thank you for the today’s post. We are so grateful for the time you take to keep us updated. I thoroughly enjoy the replies here. Yep, I’m needy; I read every single one of them — sometimes more than once. I honestly feel the love that is poured out in these replies, and that’s a good thing!
I hope all goes well with the Baclofen reduction. I think I can speak for all of us when I say that we hold our breath until we get news that all is well.
God is, and He is blessing us every one. Love and prayers
Pam GrahamGeorge says
You have every right to rant and rave. It is actually healthy — considering everything you, Ryan and your family continue to endure. Leave the praying and faith based encouragement up to those of us who believe in God the Father. Valentines Hugs to you and Ryan. …still here.
How funny, if memory serves me, isn’t Alex Woods the one who had a post in the past saying how wonderful he was and how he had regrets and he was not even part of the group??? I can’t look back now, but seems to me some one said they were a friend of his cousin or something
Yet, Alex Woods has a few photos on his Facebook where he is buddied-up to Vantrease. A bit contradictory, yes?
I’m the guy who’s friends with his cousin. When I realized that, I thought, “Wow, Delaware really is a small world.” Alex Woods is also apparently dating a girl who goes to a Western PA school that I’m attending for grad school. Even smaller world.