
<via http://supportnetwork.org/>
Okay, it about time to put out another list to easily let you know what’s going on. Hey, I know I’m all over the place from one day to the next and I appreciate that you keep up with this. Thank you. This is why I feel like I owe it to you to bring some order to my chaos every once-in-a-while.
Most of it I wrote about before. If you follow the website daily you could probably skip today’s post without missing much… but I hope you don’t. If I missed anything you might be wondering about then just let me know.
Things worth knowing:
- Baclofen. Ryan tolerated the last reduction on February 14th. He is on for another reduction on Tuesday that will take him from 96.1 mcg to 80 mcg (16.8% decrease). He began 2012 at 155 mcg, so the absolute reduction since the new year will be 48.4%. Since last year at this time (400 mcg), this is an 80% reduction. Also on Tuesday, his pump will be drained and refilled with a lower concentration to allow the pump to flow sufficiently enough not to stall. So even though the pump will be working faster, the amount of baclofen reaching his system will be less since it is more diluted. It is my hope that he can completely wean from baclofen altogether and the threshold he must tolerate before stopping it is 40 mcg. I envision the schedule to step-down like this: 96.1 -> 80 -> 65 -> 50 -> 35 -> 0. This means that after Tuesday’s adjustment, Ryan is a mere four reductions away.
- UTI. Ryan is several days into his fourteen day course of antibiotics to treat his latest urinary tract infection. All indications show the infection is being eradicated. We are in consultation with a urologist to find ways to lower recurrences.
- CT Scan of Abdomen and Pelvis. For those who might have missed the post from Thursday, Ryan had a scan to check the health of his bladder and kidneys. Another goal was to see if something might be causing his UTIs, like a kidney stone or disease. The scan showed Ryan’s system is healthy.
- Dexascan. On Thursday we had a dexascan performed that measures bone density. We are still waiting on the results, but I’m fairly certain what it will show. I suspect Ryan has suffered weakening to his skeletal integrity. In anticipation, we are already beginning to develop a treatment plan.
- Femur. This break healed beautifully. While we where in getting the CT scan and dexascan I had them take images of the femur to send to the orthopedic.
- Civil Case. Still in the discovery phase. I am scheduled to give a deposition in May. I can hardly wait!
- Surveillance. This topic really pisses me off! I laid out significant cash to buy a surveillance system. This money could have gone to Ryan’s care. But, no… some trouble-maker forced this upon me (see my February 9, 2012 post, Faceless Bastard: Ignoramus or Trouble-Maker?). Anyhow, the system comes with eight cameras that also capture audio. I’ll mount these to give full coverage. My goal is overlapping coverage in most, if not all, places. There will no be a single blind-spot, I promise. These cameras are effective in low-level lighting (like when Ryan is in bed). All cameras will feed into a digital video recorder (DVR) that will hold months-and-months of footage. When the disk is nearly full I’ll transfer it to a DVD library (otherwise it would begin rewriting from the oldest footage). This will be up-and-running on Monday, with uninterruptible power supply to boot. In the meantime, I’ll continue to use what I have (one camera, my computer, smartphone, etc).
lsdj
Ken,
Do you know who made the accusation? Just wondering if you could counter-sue this a****** for slander/libel. I can’t believe that happened. Anyone with a brain knows and can see how much you love Ryan. Unbelievable!!!!….SHSP in Morgantown
No. The coward sent it anonymously via US Mail.
Sorry you had to spend funds for a survellance system. Knowing you, it will be set up first class. Hope we learn whty Ryan is suceptable to the URIs.
Collateral damage…the gift that keeps giving. π I’m so, so sorry that every time you turn around there is a new expense or infection, etc. I pray that Ryan continues to improve and that the miracle we all have been praying for unfolds very soon.
Ken when you go for your deposition, is this open to the public? Or do we have to wait for the trial to offer encouragement? I’m serious about getting a bus full of people to support you. We could call it the Karma bus! π
Love to you, Sue, Kari & Ryan.
carla
Love the KARMA bus. I may travel from Buffalo to be on that one!
I’ll be on it Carla! And I know so many more would be too…Anything that will help Ryan. <3 Gail
Ken,
All great news! (except the unnecessary expense of the cameras, of course) I’m anxious to see if eliminating the Baclofen altogether will increase Ryan’s awareness. Do the doctors tell you what you might expect? Also, I’d love to hear about the latest IBRF testing and how it compares with previous testing. There are so many people learning invaluable information from you and Ryan that will improve TBI treatment plans in the future. Thank you for keeping us up to date!
Love,
Jane
I too, am sorry that you had to incur the expense of a Survellience System to protect yourself from any stupid accusations. I take it you never received an apology from the a$$ that unfairly and without proof make this malicious accusation. You and Sue have been nothing but devoted to the recovery of Ryan and it amazes me that anyone could think anything different. Shame on whoever did this but like I said KARMA is the best recourse and you don’t have to do a thing.
On a more positive note, the Baclofen reduction is awesome and the MotoMed is getting more exposure and gaining some momentum. Here’s the same challenge I put on Ryan’s and my personal Facebook page: My Monthly donation is in for February – I challenge all of Team Diviney to do the same! Let’s get this much needed equipment for Ryan!
I guess it’s out of the question to send the bill to the thugs and the parents from HELL? (Vantrease and May – yes that’s you!)
I, too, think it’s a darn shame that you had to pay for and install a survelliance system! The only good thing about it is that some of the footage could possibly be used for future training in therapy techniques, etc. Hoping that someday you’ll publish a book(s) about TBI recovery.
Looks like next week is going to be a bit milder again, I feel some more steak coming on π or at least some dogs and burgers.
Blessings for a great day!
Sending love & prayers & hope, always!!
Paula
Your a good dad….one of the best I have ever come across. Hope you enjoy this beautiful day. Always praying.
Ken,So glad leg is healing nicely and hoping you all get to the bottom of Ryan’s UTIs.The reduction in Baclofen is amazing and praying Ryan will show some sign of alertness and awareness when its lowered even more..Keep us up to date on Civil case.It saddens me that you had to buy a “surveillance”system ,with all you have to do, because of one ignorant person. You,Sue,and Kari(when she’s home) couldn’t be more LOVING or CARING in all you do for Ryan.. Stay strong and just keep up the GREAT work .Ryan will Thank You forever….Love Gail