Ryan is now twenty-four hours removed from the last baclofen reduction. So far there are no adverse reactions… I think. My only concern is he seemed restless and fidgety throughout the night. Still, there was no indication that he was in pain. This is not all that uncommon. I’d say Ryan has an equal amount of restful nights as not. The only way to know for sure if it’s not related to the baclofen reduction is to continue to see how he does. One peaceful night is all it will take to remove my concern. Tonight would be nice!
I was particularly interested in how Ryan would behave once I up and about this morning. If he continued to seem a little off then it might be good reason to reconsider the last reduction. Fortunately, he settled down and is presenting himself like any other day. What a relief.
Assuming Ryan tolerates this well, it is a matter of weeks until we trial the complete removal of the medicine. Expecting the best right from the start, I sent the following email to the Neurologist yesterday afternoon:
Dr. Fellus,
The latest baclofen reduction (from 60 mcg to 45 mcg) caused no adverse effects. Ryan remains flaccid. I realize he is at a point where we could trial complete cessation of the medicine, but I’d like to play it conservative and reduce it one more time. Would you fax a script to Basic Home Infusion (fax 201-475-9630) with something like the following:
“Decrease baclofen rate to 30 mcg. After 10 days from the aforementioned reduction, rinse and fill with saline and set at minimum rate.”
I’d like to make sure Ryan is able to completely tolerate the absence of baclofen for three to six months before having the pump removed. Does this sound reasonable?
Ken
I just looked over my email and had to giggle at just how proficient arrogant I’ve become. I’ve moved beyond suggesting treatment to actually recommending how it should be written. Oh, if I could just get my hands on a prescription pad (and a medical degree)!
Later in the day he wrote back stating that this is a prudent approach and will write the order (which was written exactly as I suggested, I might add). The wheels are in motion, my friends! The timeline falls out like this:
- April 16: Baclofen reduction from 45 to 30 mcg.
- April 26: Earliest date to trial complete removal from baclofen (pump will remain operational by delivering saline at the a minimal rate).
- August: Earliest surgical removal of pump and catheter.
I curse the day this happened. I curse the people who brought this upon him. Yet, I feel a sense of satisfaction each time progress is made— no matter how small — in slowly putting my son back together.
Ken, I check on you and Ryan nearly every day. I’m so thrilled when you post these victories. One tiny miracle at a time. The huge miracle is the love we all see here. Hugs to you and your family
It’s always great to read about progress you are making with Ryan. We are all praying for him and God is helping. Great work Ken.
Ken, I thank God for allowing you to be His instrument. He’s the Boss at Mission Control, and He knows you’re the right man for the job!
Speaking as a charter member of the Middle Of The Night Club (MOTNC, and there are many of us, I have been awake since 3:15 a.m. thinking about Ryan, wondering if he is having any reaction to the baclofen reduction of yesterday, and praying for him and for all his family. I also think of the grief that is caused by the gang responsible, and hope that they hate what they did, and possibly even hate themselves! How could they not, unless, of course, they are as unconscionable as they seem. Guilt and self-hatred are proper punishments for their deed even if they are never dealth with any other way. I’ve seen this kind of self-hatred in action people are taken down by it. It is worse than prison and there is no escape day or night. Someday I hope they will take responsibility for their actions, but even if they don’t, there is always karma, and I’ve seen this, too. There is no way out for them other than restitution to Ryan for what they did to him. They owe him!
Hope your day went well and that the night will be peaceful, too. Love and prayers.
I’m sure that Ryan will sleep well tonight especially knowing Kari may be home tomorrow for Easter??!! Way to go Ken. You are wonderful. We are all amazed at the level to which you have educated yourself in all areas of Ryan’s care – both from a medical standpoint and from a parent’s desire to just keep him comfortable and in top physical shape. No wonder you don’t have time to sleep – you must be constantly reading – literally nearly putting yourself thru med school!! Love to Ryan, Sue, Kari and you – Happy Easter.
awesome news. prays for him always.
We are celebrating each victory with you, Dr. Ken! I hope you both have a restful sleep tonight. Love and prayers for Ryan and the whole family always <3
And you are doing a great job. Nobody could do it better! Thumbs up!
Well, Dr. Ken, too bad you could not write a “prescription” for Austin Vavtrease, Jon May, and their friends who stood by and watched this happen. Too bad we are not back in the days of the wild west, justice would have been served!
Ken, you have forged through new frontiers and defied the skepticism of old school medical knowledge to get Ryan where he is today. You are a pioneer in state of the art treatment for traumtic brain injury. I know this is not what you planned, but where many have walked and fallen, you have risen to take medicine and healing to the next level. All in the name of Love for Ryan.
Few will accomplish something so incredibly noble and heroic. Ryan looks fantastic and has come so far. Take your place front and center and hear our applause — we are in awe!
Praying for Ryan’s continued progress, and for strength, courage and the fortitude to stay the course. Love, hugs & admiration…Paula
Ken, We all despise the ones who did this to Ryan, but are so thankful he has you and Sue ,who have gotten him so far .Praying baclofen reduction continues going well and you can stick to your schedule. Hope Ryan has a calm,restful night ,Always here thinking of you all Love gail
It’s incredible how you approach every step of Ryan’s care. Had it not been for you and Sue and your dedication to Ryan, he’d probably be laying somewhere with no changes to his routines or progress. You are truly incredible parents! You are never alone, we all want you to put your son back together. We curse and despise the people who did this to your precious son. I especially despise their parents. Thank God Ryan has you~~