Hopkins
Oh, yes! Done! Yesterday is just that… yesterday.
One thing about me is I loathe medical appointments. Even more now, that they are a huge part of our lives. I’ve been known to get a bit cranky when the appointment time passes. Some might call me downright annoying.
For the record, I seldom blame the doctor. To me, this is an administrative function. Nothing more than sloppy staff work. When I would take the children there was not much I could do about it. I’d wait it out. When it was for me, well, that’s a whole different ball game.
My rule of thumb is to never wait more than 30 minutes past my appointment time. I give fair warning at the 15 minute mark that I simply cannot wait too much longer. At 30 minutes I promptly reschedule. If really irritated, I’ve been known to bill them at the same fee they charge for a missed appointment. Funny, they never pay. I swear, it should be in the patient’s Bill of Rights to be treated promptly.
My experience at Johns Hopkins was not pleasant, granted. Still, Ryan was treated well. That’s really the only thing that matters. And, when I reflect on the day it was just a cascading effect. A domino string that started when I walked through the doors.
Here’s my gripe though. They made us crazy getting paperwork together. It consumed so much time (Sue handled this). I cannot express my utter disappointment that they did not exercise the same diligence. Or, at least a minimal amount. So, it really wasn’t the working staff yesterday to blame (although they felt the brunt of my ire). It was… are you ready… the administration. Nothing was ready for his visit. Well, almost nothing. They did have his name, birthday, primary care physician, and ordering doctor. But, that was all. Not even their contact information. I was told a “book” should have been prepared prior to our arrival. The book was prepared after-the-fact, causing significant delay.
Good People
Fortunate for me (and Hopkins, I’d suggest) I was in the company of a wonderful man, Tom McLhinney. Tom’s son, Brian, was the other boy attacked. Like Ryan, he never threw a punch. Like Ryan, he was defenseless. He was unconscious from Vantrease’s punch before he even hit the ground. His jaw broke his fall, breaking it. He had gravel embedded in his face and blood streaming down.
Brian had his mouth wired for months. He had to live in an apartment alone, constantly reminded of Ryan as he passed his room. That had to be hard and from what I heard yesterday, it was and continues to be so to this day.
What Next
The MRI scan will be sent to IBRF in New Jersey. From there, they will review it and pass it along to have a digital 3-D image of Ryan’s brain built.
Once this 3-D model is complete, it will be used to simulated certain treatments. They will be able to know, with reasonable certainty, how certain stimuli will affect a neuro-pathway and those downstream.
Despite all the frustration, it was worth it to experience yesterday. It allows us to continue moving forward with Ryan’s care. I’m not sure what I’d do if I ever felt we reached the end of the road. I never want to be “not moving forward”.
I learned years ago when my mom was hit by a car and in a coma for months that we had to be her advocate and we never took no for an answer or “we’ll get to her as soon as possible”. We made it known that we had an army of people that would be by her bedside to make sure she got the care she needed. Miraculously she came out of it and is doing great…that was 8 years ago.
Last year as my husband was going thru test after test for suspected Pancreatic Cancer we too went to Hopkins. Before we went my husband made phone contact with a triage nurse and called her all the time. Yes when we went for the appointment we had to wait and it was excrutiating and a very long day. After the diagnosis of stage 4 Pancreatic Cancer we were told by a friend who also had been to Hopkins to immediately drive up there and get his medical records. We were not taking any other answer but yes we’ll get them right away. And within 1 hour we had what we needed and were out of there. On the drive back we kept trying to call the cancer center that would be handling the treatments…couldn’t get thru. we decided to just drive there and make the appointment. At first they looked at us like we were crazy but we persisited and had an appointment within 2 days. time was of the utmost importance if he had any chance to beat this. Treatment is going well and the tumor is shrinking.
So what I am trying to say is that we all have to be advocates for ourselves and our loved ones who can’t do it for themselves. I can’t imagine what you guys are going thru but I am amazed at your strength thru such an unimaginable situation. Continued prayers go out to all of you.
I never want to be “not moving forward”.
well said. Hope is very important and new medical advancements are made EVERY day. You will get Ryan back 🙂
Hey i understand what you mean about getting fustrated waiting for the dr. It seems that you wait and wait then they come in and dont wanna deal with people sometimes. Hope all goes better next time you go to dr. God Bless
Moving forward, always moving forward. Still here.
Wow I’m not sure what that gal wrote, but it looks as if the comment was deleted. Thank GOD. I cannot handle the naysayers and negativity. Whatever she wrote, it must have been downright cruel. There is NO place for that in this blog. We come here because we LOVE the Diviney family. We come here because we BELIEVE in Ryan. And we BELIEVE he, as Cam’s/Sam’s late mom used to say, “Is a miracle in slow motion.” Many of us have the ultimate faith that Ryan IS being healed. We may all be taking different spiritual paths, but most of us KNOW WITHOUT QUESTION that God is perfecting His Plan with Ryan. And WHEN (not if) Ryan wakes up completely, HE will be the first to say, “God never gave up on me, and neither did my family and friends.” Ryan, you and your family are LOVED UNCONDITIONALLY by so many. Most importantly by God.
SHSP, NGA !! — Carla
I’m shouting out a big AMEN to that, Carla! And thank you, dear Paula, for standing up for “our” Ryan. I’m proud of you and all the other prayer warriors surrounding and encouraging the Divineys in the name of God’s relentless love for each and every one of us <3
Each human life matters more than we can know! WE CARE!
I read this blog and all the uplifting comments one-by-one, not because I’m bored and have nothing else to do, but because I CARE, and I am so thankful that Ryan has come so far. I am here forever! Sending a gazillion positive thoughts and hugs to you, Ryan, and to your family! Love
Jo ,I feel the same and I’m so glad so many of us do too .Only positive thoughts and healing for Ryan. Gail
Michele, — where have you been?! This is *Ryan Diviney* we’re talking about here! Have you ever met him? If you had, you would know that he is not the kind of person to give up — *ever.* Wow — do you know how hard this young man has been working to get better? Do you know how much his family has done to get him where he is today? There were many times Ryan could have died — but didn’t…that’s not coincidence, that’s called a will to live!! Ryan shows signs of recovery on a regular basis. For example, I saw his Mom ask him to raise his right hand, and right away, he did. As my daughter began talking to him, he turned his head towards her, and after a few moments, he began to nod his head “yes.” If the doctors with the International Brain Research Foundation didn’t think Ryan had any chance of recovering, they would be bound by ethics to tell the Divineys. Instead, they informed Ken and Sue that Ryan’s brain has shown moderate healing from as recently as December until now. Life is too precious to throw away. Ryan is too precious to ever give up on. He’s trying so hard — you cannot in any way justify “just letting him die.” He is a young man, strong and full of promise. If you spent just five minutes around him, you would take back your words and apologize. By now I’m sure you see that no one posting on this blog, or, on the Come Together for Ryan Diviney on Facebook agrees with your point of view. The Power of Love is very strong, and the Power of the Lord is even stronger. There is a reason this remarkable young man continues to fight. I feel privileged, honored and blessed to know him, and I cannot imagine in my wildest dreams ever giving up on him. And if you knew him, you wouldn’t either. Please think about everything I’ve said here, and reconsider. Then say you’re sorry, because you should not have spoken about that which you do not know. And you don’t know Ryan K. Diviney.
Paula ,I don’t know what this person wrote but it sounds like she thought we should not keep praying for Ryan’s recovery ….WHAT IS WRONG WITH HER… I ,like everyone else hold great faith and confidence that Ryan will recover …..there is no other way to think and with all the prayers and the amazing care Ryan ‘s Dad .Mom and family give him, HE WILL HEAL…God Bless them all….. Gail
Amen. Gail!!!!
First time poster, long time follower. I learned of the crime committed on Ryan and your family shortly afterwards by friends of friends in Ashburn. Yes, Ashburn is still a small world even with the profound growth over the last several years. I remember (not personally) you and your family from DLL days, when DLL was the only league in Ashburn/S.Riding area and before the AAU movement. Our guys were little, DLL was a small family. Parades in Ashburn Farm to kick off season and only four ballfields (S.R., CM, CP and Lions Field). Though there were families we did not know personally, it didn’t feel that way, we spoke to one another while our kids played ball and their siblings played with one another. Only now do I realize that those were easy times. Then, they felt busy, hectic…caring for younger children. But the worry intensifies..driving, travel, college…. What happened to Ryan is every parents worse nightmare. Falling victim to evil. This is why what happened to your family feels so personal to me. Sue’s words could be mine….missing speaking to Ryan late at night (late phone calls) just to talk. Her sorrow and pain is palpable as well as her hope, strength and love. I also feel your anger and sorrow, but feeling and living it are two different things. I can’t imagine. But please know there are many out there like me who do what they can to honor Ryan. Whether it’s fundraising, neighbors helping out or prayers. I hope you feel the silent out there who visit your journal everyday. I hope you feel the positive energy coming your way everyday. We are here, reading, listening and thinking of you. Your son is our son too….we’ve cried with you. Keep writing, keep fighting. I believe….
I now confirm my Dad’s appt at his Doctor the day of and check if they are running behind, too many times we were kept waiting way beyond what is reasonable. My Mom was kept in the patient room for 1 hour once, it was cold in there, boy was I pissed, and p.s. the Doctor when he is late never apologizes — the Dr. didn’t realize she had been scheduled in because it was a same day urgent appt. I complained to the Office Management (aka Administration) as well as the Doctor’s who “own” the practice in person. All of a sudden by no coincidence, there is no more of this BS. I believe in being fair, not a victim, and empowered in life generally and especially in medical settings/institutions where all of a sudden people become objects and “its”, part of the used furniture often times0 unless you have an advocate who can speak up assertively on your behalf or be a pain in the @ss to get the attention you need and require. It doesn’t not work to be PASSIVE, one has to be tacticalfully assertive in medical environments, otherwise you go unnoticed it seems and not a priority. I understand very well that there are emergencies, omissions, mistakes in the world that cannot be helped… also I have no sense of being “special or entitled”, however, I will chase those Doctors and nurses down in the ER if need be to get results, I know there are emergencies, somehow there has to be a balance. Most importantly Ryan got the treatment he needed and you all are again “moving forward”, which is what I am all about too. My Sister will tell you I’m on the impatient side, however, with maturation setting in lol, I’m becoming a little more patient each day, but I hope I stay a live wire at the same time for life and channel that to be advocates for those that don’t have a voice. May God Bless You, Ryan and all your family as well as the McLhinney family. Peace and Love to you all.
Thanks to my sister, Patrice, our 96 year old Dad is alive. Why? Because when he was in acute kidney failure due to a problem we didn’t know was there, instead of “just letting him die because he’s old,” she said, “NO!” and proceeded to make sure everything was done to help him live. He was so close to dying, but the fact was, with appropriate treatment, he could survive and live a decent quality of life. And for the last three years, he has! Does he need a lot of help? Yes, and my sister willingly and lovingly gives it to him. Why? Because he’s our DAD. Why does anyone go the full distance for a loved one who’s in trouble? Because it’s just the right thing to do!! My sister didn’t stop and think, “hmm, should Dad live or die.” She realized that he could have more time on this earth if he was given the help he needed. Everyone deserves that!!! It is a tragedy that many people don’t get that kind of help!! Thank the Lord for people like my sister, and Ken and Sue Diviney — and Dr. Hinkle, Dr. Rodriquez and Dr. Wiger and all those who work so hard to help others have a chance to live. What would this world be like without you?? You all are my heroes.
Ditto, Paula!
Hi Ken,
Ahhh the “hurry up and wait syndrome” strikes again….gosh I hate it when that happens! With everything you and Sue had to go through to make this MRI possible, you’d think, as you have said, they would have afforded the same preparation for Ryan. Well….it sounds as if the administrative detail definitely fell short. In our business, we get the whole “that’s not in my job description” attitude, or as I like to call it, “the company mentality.” It’s really quite sad, actually. Times are tight, everyone is understaffed, but yet some outfits just don’t care who they inconvenience. They should have at least been profuse with their apologies!!!
Paula’s idea from last night’s posting (re calling Hopkins or whatever facility will handle the next appointment) ahead of time to make sure they are prepared would be great. Her idea above regarding having copies of the medical records on hand is a good one too. I remember when Mom was in the hospital we used to also ask for the doctors “orders” so we knew what was coming and why. The staff didn’t like it but we didn’t care. After several medical mishaps involving prescriptions that took about two weeks of life away from her….we were owed that much.
On a lighter note, at prayer group last night I left the spider plants with Paula to drop off at your house. I would have left them on your doorstep but wasn’t sure if we’d have freezing temps at night.
Here’s to a restful day for you and Ryan, my friend. Love/hugs, carla
Carla, so sorry you lost this valuable time with your mom. Every nano-second counts when it comes to time spent with our loved ones who are sick and/or dying. Love.
Thank you Jo. I wasn’t trying to make my post about me. I just wanted to share (and use an example) about getting copies of the doctor’s “orders” as it might help things go more smoothly for Ryan. <3 carla
Dear Ken,,,Glad for you yesterday is gone and over . Just a shame you had to go thru all that .Hope they can get the 3D MRI ready soon.. And thank God they treated Ryan good. Like you said ,that ‘s what matters Don’t blame you one bit for having to wait when you’ve made an appointment and have everything ready..Very frustrating Hope your day goes better today and keep up all the good work. Ryan deserves it…..Gail
Ken, you really have an amazing attitude. I love the way you are able to stand back and go big picture, even when you’ve had to endure things you should never have to endure. Admin functions in hospitals appear to be taking the hit when it comes to cutbacks. I wonder if this is the case at Hopkins, too. It’s not an excuse, though, for them not being prepared for Ryan’s visit. They’re a world class hospital and they need to act like it. I’m guessing that eventually Ryan will need a follow up MRI. If this is the case, might I suggest two things: (1) Call the medical records department at Hopkins and request copies of all Ryan’s records and test results. This way, you will have them in hand for your next visit; (2) Ask for the name and phone number of the clinical or administrative coordinator who handles admissions for the Radiology Department. Several days prior to Ryan’s next visit, call this person to confirm Ryan’s appointment and find out if anything else will be needed. Hopefully this will help Ryan’s next visit to go more smoothly. I’m still tempted to address with Hopkins what happened to you and Ryan. Just let me know. Meanwhile, it is with great hope and much prayer that we await the commencement of the IBRF program. ( As an aside, have you ever thought about having this whole process documented via a filmmaker? The reason I’m asking is, since the treatment Ryan will be receiving is at the forefront of medical science, I would think it would be informative for doctors working in this speciality). Ken, I am praying that your day goes well and the sunshine brightens your home and your spirit. Sometimes it’s the little things we have to grab hold of to push through. There are lots of new people learning about your family thanks to the DeClutter event. The more people, the more love and support. You guys deserve it and then some. Love, prayers and unending hope for Ryan. Paula
Speaking of waiting for a doctor, do you remember having an appointment with an eye doctor (Dr. Brown) when you were in college? He didn’t see you at your appointment time and you got up and left. His office called our house to see what happened to you. Looks as if things never change.
Hoping and praying for good news with the 3D-model.
Actually, I do remember. It was, perhaps, the first time I started my self-initiated policy. It was either with him, or the dentist (who later went on to treat prisoners).
Hahaha some things never change!
LOL
Here I am, thinking of you, praying for you, wishing you a peaceful day today. I hope all goes well — you deserve it! Like so many others, I have Dry Eye Syndrome, related to Sjogren’s Syndrome, and am on the way to the opthomologist to get checked out this morning. Still here.
Raising awareness for those of you who don’t know. Ryan also has this painful syndrome, which must be closely monitored because of the possible damage to the corneas.
I’m glad yesterday is behind you!
I hope you get the answers/results you want back from IBRF, Ken.
Sending lots of special bear hugs today from the whole O clan. I hope today is a much better and less stressful day for you all.
Much much love,
XOXOXOXOXOXOXO