No complications cropped up over night (Yippee!), meaning Ryan is scheduled for discharge at noon today. That’s not to say Ryan had a good night. He didn’t. He was in discomfort that waxed and waned in direct correlation to the pain medication’s schedule. I will say, to my surprise, he isn’t moaning any longer. This stopped sometime around four in the morning. I’m just hoping the ride home (and transfer) doesn’t knock him around enough to make the pain resurface.
While here with Ryan at Children’s Hospital, we used the little time we had to get the ball rolling on several other fronts. For one, we lined him up to get a urodynamics test (probably later this month at Georgetown University). This is another approach to getting to the bottom of the chronic urinary tract infection. This test essentially tells how his bladder and urethra are behaving.
Second, we opened the door to get him in to Children’s Hospital’s Endocrinology Clinic. Specifically, we can use this branch of science to get a biological profile of how Ryan’s endocrine system (i.e., glands that secrete hormones into his system) might, or might not, be contributing to bone density lose and urinary tract infections, among other things. Beyond this basic system, many organs (like the kidney, liver, heart, etc.) that are part of other body systems have secondary endocrine functions. Confused? Yeah, me too. I’m sure I’ll understand it more as we get into it, but I described it as best I can… given how little I know.
I believe I purposely forgot how little rest a person can get while at the hospital. Unlike at home where we quiet and darken the house at night, keeping disturbances to a minimum, this is not a primary goal of a hospital. Nor should it be (at least in some patient’s cases). My only suggestion is, perhaps, the multiple groups of teams (across many disciplines) attempt to evaluate Ryan at a given time. A single examination then could be shared among doctors.
Now, for some light-heartedness.
People seem on-board with how I want to handle saying good-bye to Ryan’s baclofen pump. Remember I said I’d like to take it to a safe area and unload a full clip of 9mm rounds into it? Apparently that’s just not enough for you guys! People are wanting me to video tape it as I do it. All I can say is, I will… for you! I’ll point one camera at the pump and another on me, recording simultaneously as I send a hail of lead downrange.
For the record, I might be a bit rusty with my aim. Hell, I used to be a dead-eye and could hit anything. I just might need to practice a
bit lot right before I flip the video on to record. I could tell people that I want to get to know the new gun (which is true), but it really has more to do with my technique… and aging eyesight.
Allison Hornung Weitzel via Facebook says
My brother has a pace maker. He had one replaced, so he just keeps the other one. He likes to show it to people just to be interesting. It could be a learning tool, but I understand how you feel because the pump made Ryan have pain
Often times, as I read the daily posts, I want to post a note to express support, love, hope, etc. but I just can never find the words. In a situation like this I know of none created that can adequately express the highest level that one can feel as well as possess the ability to convey.
I like to believe that within good hearts lies an enormous amount of power; miraculous life altering powers but we really must believe with fervor and every fiber of our being. I think it would be extra spectacular if all the Ryan Ralliers could choose a day and a time to stop for a brief time and spiritually unite. Believing in the deepest core of our hearts that Ryan will show/display even the slightest level of any type of improvement would be remarkable as we start baby steps to send Ryan deepest healing energies that, if we truly believe, may/will give Ryan the hugest extra boost up that he needs. An enhanced/heightened awareness in which we can ignite a spark within, collectively fan the embers, to fuel the flame, which builds the fire, and ultimately will allow Ryan to open up a camp of his own within his body, as Ryan makes his makes his journey back home.
With all my love for the Deviney’s, thier amazing friends, community, and the exspansive network of supporters. The time is “now”. 🙂
Jo Hobbs via Facebook says
Have gun will travel LoL.
So this little medical miracle device will come to a violent end. It’s your call, Kenneth, and I respect your decision for the demise fo the Baclofen Pump. There are far worse things you could do to vent. So happy Ryan is doing well and you can go home. Love and SHSP.
Once again, you are leaving no stone unturned in your quest to get to the bottom of some of Ryan’s medical issues. Getting those appts. to further expore the UTI and bone loss was excellent. I actually understood your explanation of what might be contributing to these issues. I feel like you’re constantly exploring new territory — and in some cases discovering answers no one else has sought or found.
Ohhh I’m a scaredy cat about guns….but if you feel it will be cathartic to shoot the heck out of that pump I’m all for it!! I’m sitting here trying to picture a video of it — oh my goodness the one thing people have to admit about this blog is that one never knows what one might find lol. That’s what makes it so darn interesting!! No wonder it’s at the very top of all blogs for readership.
Well, I’m praying Ryan’s pain level continues to decrease and that the trip home won’t be too rough. Thinking of you all and praying you will be able to rest once you are home and settled. Or is that just more wishful thinking on my part?? Probably.
Sending my love, peace and prayers for healing….
Paula, maybe this could be a fundraising event, like buy a bullet. A person could sponsor a round with any message they want on it (akin to the bombs dropped in WW II). Guns for a good cause!
Ken,that is one of the most creative fundraising ideas I’ve heard yet 😀
wishing you all easy travels back home, and a fast, event free recovery for Ryan!
Sue G says
I’m relieved to hear things went well with Ryan’s surgery. Most importantly, I do hope his ride home isnt too bumpy. There is nothing worse than being in an ambulance when in pain–nothing against ambulance or the great people who occupy them to aid others-they’re just bumpy:/ It makes me anxious to hear how he’s in pain but can’t verbalize the extent of his discomfort. I cant imagine what that feels like for you and Sue. Speaking of Sue, please tell her that I think (and pray) for her often. And to the pump, I’m looking forward to the video and appreciate your offer to share with the rest of us.
Ann H Tearle via Facebook says
I hope his pain will pass–quickly–but it means a lot that he can feel it–his mind is processing…….and that’s a good thing:)
Gail Doyle says
Ken, Hope Ryan has an smoother ride home and his pain lessens. Finally something that may get to bottom of UTIs.That sounds real good! How you investigate and get all these tests going is completely amazing and all on so little sleep. You and Sue are AMAZING! Praying every day and feel in my heart Ryan will get better.
And I have to say God bless you all
Ryan's Rally: We Got This via Facebook says
Grey, I like your idea (even though I lost faith). It brings attention to Ryan and might help me spiritually. Hey, how about those days we spent as alter boys (we were the best team, by the way)! We had some great times.
Ryan's Rally: We Got This via Facebook says
3″ diameter, 1.5″ deep (about the size of a hockey puck).
Andrew Polzin via Facebook says
How big is that pump?