Ryan’s surgery took a bit longer than anticipated, but went smoothly. I wish I could say the same for the hours immediately following.
He was struggling to breath. It was clear he was in distress. Each time he inhaled he gasped. It progressed quickly to him pulling in air entirely too labored. He would gasp, hitch, and gasp again. He spent fours hours in recovery because they wanted him right next to the operating room.
The doctor overseeing Ryan’s recovery ordered a breathing tube (to intubate him) and for a ventilator. Hell, she was even considering doing a tracheotomy! The doctor must have felt that his airway was obstructed. I immediately denied her order and asked that she run labs to measure his level of carbon dioxide in the blood; called an Arterial Blood Gas (ABG). I’m thankful I did… and annoyed that it was me that had to think of it! Hell, I’m deeply saddened that I even know what it is.
Turns out, I was spot on. Ryan had an extremely high level of CO2 built up. He was hypo-ventilating.
Respiratory brought in a machine, called a Bi-PAP, which is a ventilator… minus the breathing tube. Instead, a mask is strapped securely to his face. It regulates his breathing and allows the CO2 to “blow off”.
Within ten minutes or so Ryan was clearly out of distress. Still, the only way to confirm he was heading in the right direction was to take another ABG after an hour or so. As we waited, the doctor kept pressing to have a breathing tube placed. We kept telling her “no”. She then asked for other doctors to weigh in and we held our ground.
It was scary, but I trusted my instincts.
Sue pulled out Ryan’s medical history showing that EVERY time Ryan was intubated he developed pneumonia. This convinced the Intensivist (ICU doctor) that we had compelling reason to object, but we just couldn’t get the Recovery doctor to relent. Then again, neither would we.
Meanwhile, as we anxiously waited for the next ABG to be drawn, Ryan’s blood pressure went off the charts! His systolic was well over 200! Chaos erupted… again.
Now, one thing I learned is never to put all your trust in the machines. This was a hard lesson learned from a time about a month after the attack (by Austin Vantrease and Jonathan May, both from Newark, Delaware). Ryan’s heart rate was all over the place, but occasionally plummeted. He was hooked-up to an external defibrillator to automatically intercede if it dropped too low. It was the first time I left his side and Sue was with him in the ICU. I literally just left him a few moments before to get a bite to eat. Sue called me in a panic. He was being defibrillated because his heart rate was showing below 20 beats per minute. I ran back to the room, took one look at him, and knew something was wrong… but not with him. Pissed, I simply asked, “has anyone assessed the patient?” to confirm the monitored reading. Long story short, Ryan was being shocked for absolutely no reason other than the machine was reading incorrectly.
So, back to the blood pressure… I looked at Ryan and didn’t see any signs that his blood pressure was high. Sue was doing the same. The nurse is telling the doctor that it’s the third time the machine has given this reading. Sue, quite calmly directs them to not rely on the machine and do it manually (i.e., assess the patient). In the meantime I walk over to his side and adjust the cuff and reposition the tubes. Can you guess the result? Yep, Ryan’s blood pressure was completely normal.
Obviously I lost all confidence in the doctor from recovery. I began running the show. I had them get a room ready for Ryan in the ICU and got agreement from the Intensivist to take him up if the follow-up ABG was improving. Even as we where waiting on transport to push him to the ICU we were still hearing (but not listening) to the doctor from recovery.
A third ABG was ordered for 11:00pm that night. Ryan was so much improved that he was taken off the Bi-PAP before the clock struck midnight.
For all that struggle, I take my hat off to the neurosurgeon. He did an amazing job! He was able to close the incision without staples, using only stitches (29 in total).
John Baggott says
Glad to see Ryan is home now. We had the same situation happen to us and we flat told the ER Doctor that he would not put anything down her throat. Like you he thought I was nuts and like you I was proven correct. The one thing I have learned throughout this journey is that the Medical Community is right about half the time and the other half are stabbing in the dark. Keep up the great work
Corinne Cox says
Still praying hard! Every day is a miracle, just remember that, We got this! Much love!
Hugs & Love to you and your family — still here, still praying
Thank goodness Ryan has loving intelligent parents. You both amaze me. Glad Ryan is home with that fluff ball cuddling him. Love to you all.
Corinne Cox says
Just checking in to see how Ryan and everyone is doing. Hopefully everything is going well with his recovery. I’m sure he glad to be home with Kat Bob and in his own bed. Praying everyday for a miracle that Ryan wakes up. God can make impossible things happen and I know he will be victorious in giving Ryan a miracle when he feels that Ryan is ready. After all, you can’t rush perfection. I know in my heart that Ryan is going to be fine, even if it’s not as soon as we wish it would happen. I also know that one day Karma is going to catch up with Austin and Jonathon and they will have to pay the ultimate sacrifice once it is their time. All I know is, they better never come to WV ever again or hope I never go to Newark, DE. Otherwise, Karma might hit them a lot sooner than they expect. 😉 Anyways, I just wanted to see how Ryan was doing and send well wishes and prayers his way! We got this! Team Diviney all the way. Much love!
Debbie Lynn via Facebook says
Continued prayers and positive thoughts for Ryan! He deserves the best!!!
Jodi Coker says
You are such wonderful patents. Prayers for Ryan. Keep fighting! I’ll keep praying!
Beatrice Susini Calabrese via Facebook says
Hugs to you and your family <3
Wow Ken. I think you should be a doctor, you are able to provide your son with the best care possible. Thank God that Ryan has you to be his voice.
Hell of a lesson Ken! The Doctors opinion is NEVER the only opinion. Prayers coming your way daily for a continued recovery and strength for all of you.
Karyn Mandracchia Ahern via Facebook says
So sad to hear all of this happened as parents we know our Children the best sometimes these Dr’s just want to push other things for us to do glad you stood on your ground. Praying for Ryan and your Family daily <3 <3
Amanda Cumbow via Facebook says
Kathy Gregory-Parks via Facebook says
My the Lord hold you in the hollow of his hand and the wind always be at your back .You all are a blessed family and the rewards are breathtaking !
Lisa Austin via Facebook says
Valencia Burns via Facebook says
awww….u truly got this. good job!
Carla Liberty says
And this, my friends, is how it’s done! You know your son better than anyone; and in my humble opinion, you should have at least an honorary degree in medicine. Your critical care skills are spot on!! Thank God for you; Ryan is in excellent hands! Sending love and light across town!
Carla and family
Thank God Ryan had you and Sue there to watch over him. He is blessed to have you as his parents. Happy to hear he is doing much better.
Ken, This is amazing! I am teaching clinical nursing now to first semester nursing students. Students who have never taken care of patients. Every week during morning orientation to the units we review the portable BP machine they have. The one thing I stress to the students is……NEVER EVER trust a machine! I tell them to ALWAYS manually recheck a blood pressure, pulse and respiration that’s not within the norm. Always re-access the patient when you get an abnormal value, they are telling you something….I hope the doctor and nurses learned something from this experience with Ryan. Thank God for you and Sue!
Glad you are home.
Mary Taylor via Facebook says
Kristin Weinstock via Facebook says
Thank goodness you were there. They were clearly NOT doing their jobs.
Donna Laribee via Facebook says
Cortney Taylor via Facebook says
that is great that the surgery went well… Ruby Memorial Hospital <3
Susan Goethel via Facebook says
This latest post shows you really are the expert on Ryan! Prayers continue coming to you from Wisconsin.
Corinne Cox says
So glad to hear that Ryan is home and doing well. I am constantly worrying about you all and also am always keeping you guys in my thoughts and prayers! You all are some of the strongest people I have ever known, even if I don’t technically know you personally. There are so many people who would not be able to handle what you all have been through and it is very admirable that you all handle everything as well as you do. You all are the greatest parents and sibling that anyone could ever ask for! God bless you all! Team Diviney all the way! Ryan is Mountaineer strong and will make it!
Jerome Kyler Beightol via Facebook says
WOW! What an incredible journey this has been. You are fabulous parents and your medical know how and skills are right up there with the very best! So happy that Ryan is doing well after surgery thanks to your interventions and insistence on doing the right things!!! Blessings to your entire family!
Jessi Lemon via Facebook says
It’s sadness me so much that Ryan and ur family have to go through such horrible things and all because of such mean hearted people Ryan and your family are in my prayers
Rita Caporicci Hoop via Facebook says
You definitely got this, Divineys <3
Sue Bennett Markley via Facebook says
Wish all patients like Ryan had someone going to bat for them when everything seems to be going “haywire”. I just wonder what would have been done to Ryan had you not known him better than the doctors. Hang in there — you all are Ryan’s everything !!!!! All his FB friends are praying for his healing and your strength to cope day to day .
Jaimi Dean Franus via Facebook says
Reading this had me on such edge. Thank all that is right in the world that you and Sue know your boy and have no problem taking command. Dang!!
Great job setting things straight at the hospital. Hard to believe those kinds of things still happen, sometimes it seems like they are just making it up as they go. You and Sue are self-made medical experts at this point. Very nice to see Ryan back home resting with his trusty feline companion.
You are an outstanding and courageous father. I hope to be a parent like you some day, your actions taken after Ryan’s surgery are admirable.
I am friends with Hannah E. (friend of Ryan & Kara). I was a year ahead of Hannah and Ryan at WVU and car pulled with Hannah on school breaks so I’ve heard nothing but wonderful stories about Ryan and your family. Now I have a daughter of my own who has a rare heart defect so we are constantly in and out of the hospital for surgeries. It’s so hard not to just do what the doctor in charge says, but I know after reading this post I’m going to follow my instincts. We are our children’s best advocate after all.
Carol A. Farr via Facebook says
Prayers for Ryan and his family/friends.
Thank you for letting us know how things are. And thank you for being Ryans dad!!
Rhonda Morin says
Holy crap! This is exactly how it is when you are taking care of someone and others think they know, THEY DON’T DAMMIT! Thank God for you and Sue!!!!!!!!!
Glad he is home.
Erica Alviar via Facebook says
I’m sorry. I just don’t know? Are they just keeping him artificially live? Or does he actually show signs that he is still alive?
Rhonda Morin says
Ryan is very much alive and not hooked to anything to keep him alive. He gets fed through a tube (real food) but not unlike quadriplegic’s. Reference Christopher Reeves. Mr. Reeves’ had to have everything done for him, he was on a breathing tube and had a feeding tube as well, was he alive or artificially live? If they removed the breathing tube from Mr. Reeves, he would have died, and eventually did from an infection related to the tube in his chest.
Ryan on the other hand has no breathing tube and breathes on his own. He manages his own blood pressure, temperatures, heart rate and breathing. He is very much alive.
Bonnie T. says
God love you all. So very thankful Ryan is through this surgery AND thankful you and your wife were there for him in recovery to get everyone STRAIGHT! WOW! Hugs to Ryan. So glad you have Ryan home. Much safer place to be.
Tammy Allen Shamblin via Facebook says
So glad Ryan has such wonderful, brave and instinctive advocates in his parents. I learned from my nursing experience that parents know “normal” more often than not with their kids. Lots of healing prayers and thoughts to ALL of you.
Jean Ellis Koch via Facebook says
Thank goodness for your strength and attention to detail. So glad the surgery went well.
Debby Hostetler Bicanich via Facebook says
I can not tell you how many times I have had to say no to a doctor or nurse. So many times they screwed up with Corey. I learned that doctors and nurses do not have all the answers. I know my son, I know him better than any Doctor or nurse. So many family members think the doctors know it all and let them do whatever they want. So many times it was not necessary and I put my foot down. Being in the hospital 132 days I saw so many mistakes made with other patients and there would have been many mistakes with Corey had I not been there, educated myself and stepped in as his mother and said NO. I also get mad when I have to tell the doctors and nurses what to do and not do. I never leave my son. I go to every xray, cat scan and blood drawl. I TRUST NO ONE!!!
Mary Kaye Booth via Facebook says
Love and prayers to you all. I have learned in the last 3 months that you must advocate for your loved ones when they cannot. Ryan is so lucky to have you to do this for him! My husband’s diagnosis of ALS had me in shock but I snapped out of it quickly once I realized how much we needed to learn, how little most doctors and nurses know and how much he needs me to be his loudest voice!
So glad Ryan is home!!
Nor Ahh via Facebook says
Well done! Glad it went well
Amy Williams Kyler via Facebook says
Continued prayers for Ryan and your family Ken Diviney!! Love the picture of him and Bob!! Hugs and love to you all ❤️
Alice Holt Ramey via Facebook says
Cheryl Shields via Facebook says
A parents love and instincts go along way…… 🙂 I don’t believe there is anyone tougher than Ryan….. 🙂
I’m glad this is over for you and Ryan – hopefully all of you are resting more comfortably now.
KarynMike Curran via Facebook says
You and your wife are Remarkable people so glad he’s home and in your care.
Melody Stanley Exline says
Glad you are strong and refuse to give in when you feel strongly about something! Parents know their children better than their children know themselves and so you would clearly know him better than that Dr! So relieved to hear that he is doing well at home now! Still saying prayers for your whole family.
Although I am also sorry that you know as much as you do about medical tests and procedures, I am also thankful Ryan has you to take charge for him! Amen to the successful surgery and many prayers and blessings wished upon you and your family!
Claudia Lovejoy Stowers via Facebook says
Parents know best. So glad he is better
I’m so glad to hear that Ryan is home and doing well. Kat Bob looks like a great nurse! I was getting antsy when we had no word after the first couple of days. You are proof once again that all patients need a family advocate. Thank God that all is better and praying for better days ahead.
PK Miller says
Whew! You folks have been on an incredible roller coaster! I think we become too dependent on, trusting of technology. It’s not unlike what a friend is going through, diagnosed w/a brain tumor: you have cancer X ergo, you get treatment protocol X! You & Sue know Ryan as well as you do yourselves, after 5 years, probably better! Ryan is blessed that you can speak for him when he cannot speak for himself. Keep doing that, Ken & Sue. Ryan can’t advocate for himself. Sometimes, it takes a lot of work for someone to pay attention When I was hospitalized post fractured hip, they wouldn’t discharge me because my blood glucose readings were all over the map. (I’m a brittle diabetic and there are times Tim is adamant if the diabetes doesn’t kill me he will!) It was only when God–aka my endocrinologist–deigned to walk over to the hospital itself from the Medical College to inform the physicians & nurses my blood glucose had been unstable for 20+ years & probably always would be, that they finally got the message. I’m reminded of a Doogie Howser episode some years ago, wherein residents & medical students “played patient” for a day & got that attitude, ” I m the Almighty Doctor, I KNOW WHAT’S BEST!” That aint necessarily so!
I’m glad everything worked out well in the end. Ryan is home with those who love him instead of in an impersonal hospital. That’s therapeutic in itself. It’s a familiar environment, complete w/cat, and that can only hasten recovery. God bless & keep you all in His care.
PK & Tim
PS That Bi-PAP isn’t all it’s cracked up to be. One of our friends has sleep apnea & used it for about 3 nights. She hated it, her husband hated it and their cat hated it! I understand it can be a godsend for people who really need it. But again, we have all this technology & maybe, sometimes, the tail wags the dog! The engineering firm in which my niece is a Principal had the Intern from Hell this summer, calling them on their cellphones because the technology existed. As Beth always says w/roll of her eyes, The good part of cellphones is youre never out of touch, can take the call wherever you are. The BAD part of cellphones is youre never out of touch, can take the call wherever you are!
Claudette G Quadrini via Facebook says
Go Ken! Well done Pappa Bear…. prayers and hugs to you all.
Lisa Tilley Svendsen via Facebook says
Ken Diviney, you are still my hero! Zombie Apocalypse comes, I am getting you on my team!
Terry Hooker says
Ken, kudos to you! I went through a similar situation less than a year ago with my dad. We were at Johns Hopkins (pretty renowned hospital, right?). Well, I felt like I was the doctor when I was dealing with his treatment team. In the end, I lost my dear father after a “minor” procedure. Makes my blood boil! But, every patient needs an advocate there to speak for them. Again, it sucks that you had to do this, but thank God you did. I pray for Ryan and your family every day.
JoAnn Caudle via Facebook says
So glad surgery went well. Hoping and praying recovery starts to go smoothly soon.
June Williges Bradford via Facebook says
You are an awesome advocate for your son!!
Gail Doyle says
Yes ,Ken ,you are Ryan’s “Dr”.thank goodness .Scary to think if you and Sue weren’t there.So relieved surgery went well and Ryan is recovering at home
Gwyn Gustafson Giaquinto via Facebook says
Way to be proactive and know your son and his body!! Glad to hear he is doing better.
Carol Crain Ramirez via Facebook says
I am sorry to say this doesn’t surprise me one bit. I took care of my mother for 12 yrs. She had a pulmonary embolism and then a stroke due to blood thinners to break up blood clot. I had issues with meds not being given when she changed floors, a neurologist telling me he refused to believe she had a stroke but had Parkinson’s. I confronted him and asked him if he had seen her records or xrays clearly showing the bleed out. He stated he didn’t have to look at them.. WTH? He told me I was welcome to get a second opinion, I informed him that wasn’t necessary because he couldn’t make an informed opinion without the facts. Needless to say, I dared him to step foot in my mothers room again. God Bless you for standing your ground. More medical professionals should listen to those that know the patient and their history best. Continued prayer to you all
Rita Mosley says
So glad he is doing better. A parent knows everything about their child and the doctors and nurses need to listen to you. Hang in there Ryan.
Patti Carroll Bottcher via Facebook says
Awesome news and thank you for showing us to trust your instincts!
Carlie Mace via Facebook says
9 times out of 10 your instincts are right. He’s so blessed to have such an amazing family by his side through it all and pushing for what they feel is right! Always follow your instincts! Way to go Ryan’s Mom & Dad!!! I’m sure he would give you a high five ❤️ stay strong!
Jean Dolan via Facebook says
Every patient needs an advocate at his or her side 24/7 if possible. After having gone through two transplants with my husband and cancer, I firmly believe this. You are a good one Ken, keep up the good job! Experience is worth a million bucks but i wish neither one of you had to have that experience. Hugs!
Shanna Poindexter via Facebook says
So horrible that Ryan is living this way. It’s sad to see all this unnecessary struggling and suffering. I know you love him, I’m a mommy too… I feel for you and your whole family. Hope Ryan gets the peace be deserves.
Way to take charge, Ken! Keep trusting those instincts!
Teddy Heather Goddard via Facebook says
I am soooo glad to know that Ryan has you and Sue overseeing everything. It’s such a sad situation when on top of everything else, you have to take charge on your own, instead of relying on some incompatent Dr. You know your child best, whether they’re a Dr or not. You are so knowledgable, Ken and in this situation you have to be. I am thrilled to know that Ryan is doing so much better after this chaotic recovery. Hang in there, you are such a Superman as is Ryan!!
Teresa Heurich via Facebook says
As a nurse I’m glad you followed your instincts. Always holt true to them!
John Maletta says
Wow. Just wow.
I’m so glad that Ryan is home resting and recovering now. Hats off to you, Ken.
Michelle Carlino via Facebook says
parents instincts are usually spot on!!!! congrats that his surgery went well. as for the recovery end of it…im sorry for that but my father being a physician always said your gut instinct as a parent over rules sometimes and you need to speak up and ask and yell till they hear you and work with you!!! god bless you and your family and i pray every day for your son!
Thank God there was a good doctor in charge — you! Prayers for Ryan’s recovery.
Tina Longietti via Facebook says
I can not even read this without tearing up, I love the picture if Ryan with the cat! Prayers to you, Ken.