This is a detailed narrative of Sam’s story of survival. Compiled by Sam’s mom, this is a record of Sam’s diagnosis and struggle with ARVD as told through a consolidation of her published Facebook posts.
At the age of 14, in September of 2010, Sam competed in his first triathlon, and I knew he was hooked. He rapidly became well known in our local triathlon community and won in his age group in most of the races he entered and quickly began coming in at the top as one of the overall winners of many races. In 2012 and 2013 he earned a spot on the USAT SE Region Jr Triathlon team. His love of the sport and joy in competing was obvious. Sam was a picture of health. Or so we thought.
May 15, 2013
While at a routine swim practice with his swim team at the local YMCA, one of Sam’s teammates insisted that Sam stop swimming and get out of the water because he had noticeably slowed his pace and did not seem like himself. Sam got out of the water, walked the length of the pool and sat on a bench to rest. As his coach turned to get his water bottle for him, Sam went into Sudden Cardiac Arrest (SCA), immediately lost consciousness, and fell to the deck of the pool. 911 was called at 4:54pm. Some of those around him thought he was having a seizure. Thankfully, a physician was on the pool deck and immediately knew that Sam was suffering from SCA. As he witnessed Sam’s last irregular breaths, he instinctively, without hesitation, started CPR. The Y’s AED was immediately brought to Sam’s side and he was shocked once before firemedics arrived at 4:59. The paramedics arrived at 5:00.
CPR was continued, he was intubated at the pool side, IV access was obtained, and he was moved to the ambulance. During this time, three more shocks were administered and he was loaded in the ambulance at 5:13pm. Once in the ambulance, at 5:14pm, a full 20 minutes after the SCA occurred, CPR was stopped when a somewhat normal heart rhythm was restored when the paramedic administered a cardioversion (a synchronized electrical shock). He arrived at Thomas Hospital at 5:25pm, was stabilized, and then transferred to University of South Alabama Children’s and Women’s Hospital, arriving there at 6:33pm.
Facebook Posts, Thursday, May 16th, 2013
I’ve been thinking long and hard about what to say. Apparently there are lots of rumors floating around. I hate to post this on Facebook, but at this point, it’s the easiest way to keep everyone informed of what has happened. I’ve lost complete track of who knows what, who I’ve texted, etc. I think I could write a book about the last few hours, but will try and condense things…
Sam was swimming at the Y with his swim team. Coach said he started out swimming normally but slowed some, got out of the water and said he didn’t feel well. Coach Jan told him to sit down, gave him some water, turned to talk to someone else and when he turned back around, Sam had fallen out of the chair onto the pool deck. He called 9-1-1, then called me. I was about 6 minutes away and headed to the Y immediately.
When Sam fell from the bench the pool deck, his swim coach called the EMTs immediately. At least one doc, maybe two? were there at Y, in the pool area and came to him immediately. He was unresponsive. CPR was started immediately, an AED unit detected v-fib, so he was shocked immediately, EMTs arrived shortly thereafter and I think he was shocked again (a total of 4 or 5 times, I think?), CPR was continued, etc. When I came in, they were intubating Sam. He was transported to Thomas Hospital, stabilized, and then moved by ambulance to USA Children’s and Women’s Hospital in Mobile. David (my husband) met me at Thomas Hospital. We weren’t able to ride with him in the ambulance, so we drove to Mobile. We arrived well before Sam and waited for the paramedics to arrive with him. He was taken directly to PICU.
Long story short… They told us at Thomas Hospital that it is a heart problem. From the initial tests, they ruled out kidney, liver and brain damage and called a pediatric cardiologist. They thought it was either an aortic dissection or Long QT Syndrome. Yes, an aortic dissection would be very rare in a person his age, but looking at the echo, the pediatric cardiologist thought it was a strong possibility and told us that he might need to be transferred to another hospital for emergency surgery. Thankfully, that was ruled out by CT and they are back to considering the Long QT syndrome idea. He is intubated and basically in a drug induced coma right now. (For my medical friends, he’s on lidocaine, fentanyl and versed).
David and I are in the room with him now. He has lots more tests coming his way tomorrow, as you might guess. Long QT syndrome is genetic, so David and I, and all five of Sam’s siblings may be having EKGs tomorrow to see if any of us show signs of having it also. It could help in his diagnosis. If this is what caused his cardiac arrest, he will get an ICD (implantable cardioverter-defibrillator).
I am overwhelmed right now, not only with what is going on with Sam, but also seeing how God’s hand was over the situation today, placing exactly the people in his path who needed to be there to save his life. He could not have gotten better care. I am so humbled and thankful right now. I just can’t express my gratitude. Thanks to everyone who called, texted, came to the hospital, brought us food, took care of my “littles”.
I will let you know more as we know more. I’m afraid there is going to be a lot of “hurry up and waiting” going on…..
Thanks to ALL of you. From the Cockrells x 8. <3
My profile picture on Facebook 5/16/13 – Sam’s last local race – The Twlight Duathlon, 3rd place overall finish, Mobile, AL, April, 2013.
David and I stayed with Sam all night. Not much to report.
Sam is in the PICU of the hospital where I work (as a part-time pharmacist). He’s in excellent hands. And of course it is a great comfort to see so many faces that I recognize. Not fun being on this side of drug delivery however. He has another echo scheduled for this morning and an EKG. He’s having labs drawn, cultures done, X-rays… He’s ‘throwing PVCs’ on the heart monitor more often than they’d like, so they’ve increased the lidocaine. He’s on his second Versed drip. His blood pressure and heart rate are stable and strong. But of course, if you know Sam and the physical condition he is in, that is not surprising. Please pray that they find a definitive answer. The thought of a lot of negative tests is as scary to me right now as not knowing.
Field trip. Cardiologist still thinks Long QT is the likely problem. Cockrellsx7 (Mom, Dad and siblings) will all be going to her office today at 1pm for EKGs. Doing echo on Sam now.
We are all back from the EKGs. Ours were all okay. Sam’s kidney function, liver, brain function all continue to be okay. Labs are okay. K+ is normal. Ca++ was a little low. Liver and heart enzymes are okay. Lots of ‘okays’. He’s intubated so he can’t talk, but can write on a dry erase board when he wants to communicate. Weaning off IV lidocaine and changing to PO Lopressor. Looks like they will extubate him tomorrow if all goes as planned. He will likely be transferred to Mobile Infirmary Monday to have a defibrillator put in.
(From Sam’s older sister, Kathryn) Sammy’s doing much better now! He’s started to wake up but can’t talk because of all of the tubes, but he’s improvising with sign language and pen and paper asking questions. He’s been “chatting” with Olivia (his girlfriend) and I for about a half hour asking all about what’s going on and what’s being done. He’s still very loopy from the meds but being the tough guy that he is, he’s staying awake to see a few people. Thank you for all the prayers. Keep them coming!
Sam really, really, REALLY wants some water. He wrote water three separate times. When that didn’t work, he frustratedly wrote, “drink drink.”
Facebook Posts, Friday, May 17th
On our way to Birmingham. Destination: The Children’s Hospital.
Sam’s heart rhythm continued to be irregular yesterday. Instead of the Long QT, now the doctor is concerned with a ‘funky’ heart beat. Too tired for technical talk. They think there’s a focal point that is misfiring. The doc in Birmingham will do mapping of his heart, and if they can identify the exact location, they can possibly ablate the area and stop the misfiring. Dr. Batten, Sam’s cardiologist in Mobile, was able to communicate with him by asking yes and no questions. Sam also communicated through writing. Dr. Batten asked if he felt a particular PVC as it went across the monitor. He nodded yes. She asked if he’d felt it before. He nodded yes. Then she asked about a race he was in a few weeks ago where he uncharacteristically fatigued early in the race. She asked how his heart felt during that episode and he wrote “crazy” on the dry erase board.
So, we are off to Birmingham. David left USACWH about 9pm to drive to Birmingham to arrive before Sam. Sam is traveling via the critical care transport jet with a team from UAB. An ambulance arrived about 11pm to prepare him for transport. Sam left at midnight to go to the airport where the jet was waiting to fly him to Birmingham. Since we couldn’t fly with him, David and I wanted one of us to be there waiting in Birmingham when he arrived, and one of us to stay with him in Mobile as long as we could. He should be arriving any minute. David is there waiting on him. I’m on my way now.
Just got word from the flight nurse that Sam arrived in Birmingham. Flight went well. David is there with him.
David, Darrel (family friend and Sam’s triathlon coach) and I are with Sam right now. David arrived at midnight, Sam at 2am and Darrel and I at 430am. I am overwhelmed right now with all of the love, prayers, and support from each one of you. I can’t respond to each text and message individually, but please know that I have read all of them and appreciate each and every one.
Don’t be alarmed that we’ve moved suddenly. There is no doubt each step since Coach Jan’s phone call to me Wednesday afternoon has been orchestrated by God. No doubt. We are where we need to be. I worked at this hospital and David and I went school at UAB many years ago. We have lots of family in the area – my dad and brother. David’s mom and sister. Tons of friends. Anyway, just another testament to the fact that God has put us in a place where we are comfortable and most importantly, Sam is getting the care that he needs. A cardiologist was here and met David as soon as Sam arrived last night.
The other kids are all fine. Kathryn (our oldest daughter) has been amazing through all of this. She’s my go to person and has, with the help of my amazing friends, taken care of everyone ‘on the home front.’ She texted me before I’d left Mobile last night that she has everyone packed and ready to come up here. Visitation is strict here, but still more lenient than Children’s in Mobile, so the three little ones will be able to see him. That will be a blessing.
THANK YOU. To everyone. I am overcome with emotion thinking of what everyone has done for us every time I stop and think about it. Thank you for all of your love and support and prayers. We love all of you.
Fact. Sam can operate iPhone with greater ease in a heavily sedated drug induced state than either of his parents when they are fully alert. Sam has graduated from pen and paper to texting on the phone. Because of the drugs he’s on for sedation, he forgets info as soon as we tell him. But this is due only to the drugs – his mental state is 100%. We’ve answered “what happened” 100 times. He’s looked at the calendar on the phone numerous times and asked when it happened, what day it is now, etc.
We came to Birmingham because it looks like instead of a prolong QT interval on the EKG, Sam is “throwing extra couplets and triplets”… ie, extra heart beats. This could likely be caused by a focal point that is misfiring. The cure for this could be ablation and that is done here, not at USACWH in Mobile.
Sam’s been extubated! Throat very sore. Not talking much. But is VERY happy to have tube out. Sedation drugs off. My old Sam is back! And does NOT like the attention he’s getting! Still waiting on cardiologist to make rounds to hear what the plan of action will be. Looks like they will monitor him over the weekend and do procedure on Monday. Just a guess.
Sam was able to shower and put clothes on and the picture above shows how Sam spent the morning… Good for the kids to spend time laughing and talking together. Wish all the kids (and adults!) who’d like reassurance that Sam is okay could have joined them. The happy conversation relaxed me so much, I slept through the entire thing. :-). Sam has an MRI scheduled for 7am Monday morning. He’s constantly hooked up to EKG, but they are doing a few 12-lead EKGs each day, too. All of that is done in the room. He’s resting now. Thanks again for all of a you. We love you all!
Everyone made it to Birmingham safely. All the kids, Olivia, Darlene, my brother and his wife, David’s mom and sister and family were all able to see Sam. Got to see several of my Birmingham friends, too. Sam’s only hooked up to the heart monitor right now. He’s a happy guy with no IVs, arterial lines, foley, intubation or nasogastric tubes coming out of him! :-). Jeff, Nic, and especially Anna were all happy to see him today. We met and talked with Dr. Lau (pediatric cardiologist) this afternoon. The plan is still for Sam to have the everything done Monday. Well, the defibrillator may be done Tuesday. We will be looking at discharge on Tuesday or Wednesday. One of his IVs infiltrated. That is causing discomfort, but he has a warm compress on it and is elevating it and they will give him lortab ATC for pain. Thanks for all of the birthday wishes. My 45th will go down as my most memorable to date, for sure. Very blessed to have my kids all together today.
Facebook Post, Saturday, May 18th, 2013
I’ve been trying to gently let Sam know how many people have been affected by this and what a Facebook sensation he’s become. Remember.. He’s the quiet guy who doesn’t even want to have a Facebook page! We thought we’d bring up Facebook on the fancy tv in his room and take a look at what’s been going on. Don’t imagine that we had a leisurely evening of navigating the web. Between taking 20min to realize that you can’t find access to letters on a tv remote (keyboard was right behind us), and then being reminded why I love my Laptop so much bc it was impossible to move from page to page (confirmed by the two teenagers in the room), we gave up and just looked at the iPad. BUT this picture is proudly displayed on the tv screen right now. I’m so happy to be able to find laughter in the seriousness of the past few days. Laughter is the best medicine!
Sam’s Uncle Dan posted this picture of the two of them together at Dan’s wedding when Sam was 2 years old.
Facebook Post, Sunday, May 19th
Sam’s enjoyed visits from several friends and family members today. He’s had a few minor complications… a pressure sore started to fester because of his immobility from Wednesday night to Friday morning. They are watching it, and hopefully it will not progress to anything worse. Also, his IV amiodarone infiltrated before they took it out a few days ago and it has caused irritation in his arm. His PVCs increased enough that they’ve started the IV lidocaine again this afternoon. Lots going on tomorrow… MRI is scheduled for 7am and heart cath at 9am.
MRI scheduled at 7am to look for at the physical condition of the heart. He will likely end up having an AICD (Automatic Implantable Cardioverter Defibrillator) either Monday or Tuesday. At 9am, he is scheduled to have an EP Study (electrophysiology study done via a heart catheterization). This could be both a diagnostic and therapeutic procedure, depending on what they find. Also depending on what they find, an AICD will likely be placed during the procedure on Monday, or on Tuesday. We will have a better idea of when we can go home after tomorrow morning. It will likely be at least Wednesday, maybe Thursday. He was started on Keflex today for his arm and has been putting ice on it. It is feeling better. Thanks for all of your prayers. They are very comforting right now. I am anxious, but at the same time, am reminding myself of all that God has done this week to get us to this point, and am finding a calming reassurance with those thoughts.
Facebook Post, Monday, May 20th
Sam’s arm is bothering him still a lot. Switching from PO Keflex to IV Ancef. He asked for ice on it a couple of times during the night, and pain meds once. (Can’t believe with all that is going on, he has that to worry about!). He accidentally pulled his IV out in the middle of the night, too. Oops. Had a good bit of blood everywhere, had to clean that up, change sheets, etc. He had a hep-lock already in that same arm so they switched his IV lidocaine to that and didn’t have to start another line. That was good. He slept really well. Nerves of steel, I guess. They should be here any minute to take him for the MRI.
Now the IV site is bothering him, which means both arms are hurting. Ugh. About to start another IV before they can take him for MRI.
Don’t have results from MRI yet. Because they needed his heart in as normal a rhythm as possible during the MRI, he had to be on the lidocaine. Now that has to “wear off” so that he will have arrhythmias during the heart cath. From his EKGs this weekend, the doctor has a guess as to what is causing the problem but I will wait until there’s a definitive diagnosis before elaborating. So, heart cath will not be until 12 or 1 today and will take a few hours. Because of the apparent cellulitis that has developed in Sam’s arm because of the IV that infiltrated, they will not be able to implant the ICD today. The infection will have to be cleared up first. Hurry up and wait. But I am reassured through the words of Judy’s pastor who came to see Sam this morning. God’s plans are bigger than our dreams.
Sam’s going back for the EP study now. Please pray specifically that they find something that can be treated by ablation and that he isn’t on long term drug therapy.
Still waiting… no update.
Nothing definitive. Ruled lots of things out, but nothing conclusive. ICD planned to be implanted on Thursday. Sam came through procedure fine and is in recovery.
Facebook Post, Tuesday, May 21st
We’ve talked to lots of doctors today. Sam is resting and enjoying a special overnight delivery from his TNT Swim Team – Chocolate Chip Cookies! Thank you!
The diagnosis is still not definitive, but what they are narrowing it down to, due to the results of yesterday’s MRI and EP Study, is something called ARVD – Arrhythmogenic Right Ventricular Dysplasia. We’ve had a genetic doctor come by and they are going to send off blood samples to get those studies started to see if they can identify a gene.
Regardless of the diagnosis, the treatment is the same right now… control cardiac arrhythmias with drugs (they were not able to identify a focal point to ablate) and implantation of ICD (defibrillator). The ICD is a “safety net” in case his heart were to ever get into a life threatening arrhythmia again. His triathlon friends may find it interesting that his trigger seems to be swimming. He never experienced any heart palpitations that he is aware of, during running or biking. It is also interesting that the two worst episodes he experienced were in cold conditions (colder than he is used to anyway). Hopefully over time, a definitive diagnosis will be found.
The course of treatment might change slighty, and of course, if they can identify a gene through genetic testing, that would be important info for the other Cockrell kids. I’m sure the big question everyone is wondering about… how will this affect Sam’s training? His activity level will be severely restricted. No more triathlons.
Sam has a possible infection at the sight of the IV infiltration. Because of this, they cannot put the ICD in place, so they are treating him aggressively with antibiotics (vancomycin and ceftazidime). They are keeping him in CVICU (cardiovascular ICU) as a precautionary measure until the ICD is in place.
If all goes as planned, the ICD will be placed Thursday and we will go home on Friday… just in time for Kathryn’s graduation on Saturday!
Facebook Post, Wednesday, May 22nd
Waiting on blood cultures to come back. There’s a chance the ICD will be postponed. They’ve also changed his medication… Trying to control arrhythmias and find something that doesn’t cause headaches.
Final decision… ICD will be placed tomorrow about 2pm. If the drug Sam starts tonight controls his arrhythmias, without elongating the QT segment on his EKG, he will be able to be discharged on Friday. Yay!
The CVICU (Cardiovascular ICU) unit where Sam is, opened in October and is an amazing facility. One of the doctors told Sam today that he was the most popular patient he’s ever had… there’s a steady flow of people in and out during visiting hours. Sam can only have a limited number of people in his room at a time so the overflow wait in a family area. It’s complete with a kitchen area where we can bring food and keep in the refrigerator. Suzanne is our personal gourmet who has made numerous runs to the grocery store to make sure we stay stocked with food.
Sam will be NPO after MN tonight in anticipation of the procedure tomorrow, so he’s got an extra special MN snack waiting for him. Suzanne is one of the many people we are thankful for who have helped us over the last seven days. We will never be able to completely express our gratitude. We love you all.
Facebook Post, Thursday, May 23rd
He’s out of surgery. It went well. Adult doc who put ICD in said he’s not used to folks with so little body fat. ;-). He’s in recovery now and we will see him as soon as they move him back to his room. Thanks for all of your thoughts and prayers over the last 8 days. We love and appreciate each of you!!!
Facebook Post, Friday, May 24th
Just got back good EKG report. Discharge is ON. Waiting on cardiac nurse to educate us on ICD. Still probably a couple of hours from discharge.
Sam and his sister Kathryn. Sam is WALKING out of the hospital. First time Sam has seen the lobby! Heading south!
(from sister, Kathryn)
Do everything in love. (1 Corinthians 16:14 NIV)
My family and I sure have been on the receiving end of this verse the past several days!!! Thank you so much to everyone who helped us out! You all have been incredible! Sam along with the rest of us are all sleeping happily in our own beds tonight for the first time in a week. Thanks to everyone; those who helped us drive, brought us food, watched the kids, took care of dogs, cleaned the house, came to visit, welcomed us home, prayed, and so much more!
Facebook Post, May 30th
Our hero! We met with Dr. Aaron Morgan today. He’s the physician who on the pool deck at the YMCA when Sam suffered from the cardiac arrest on May 15th. God was definitely working through Dr. Morgan to save our son’s life. There were many kids from Sam’s swim team who witnessed his SCA last week. As the ambulance left the YMCA with Sam, Coach Jan was told to prepare the kids ‘for the worst.’ But as Coach Jan told us, “Those kids thought they were witnessing a tragedy, but instead, they witnessed a miracle.”
I keep assuring everyone that Sam is doing great, but it seems that until those who witnessed the event or heard firsthand accounts of what happened actually see him, they don’t quite believe me. I can assure you, he’s doing great! Much to his mother’s dismay, he even snuck out for a “short” bike ride this morning. Don’t worry! I’ve taken the wheels off his bike now, and hidden his running shoes! (Just kidding). Our biggest challenge, obviously, will be channeling Sam’s energy into something he is allowed to do after the surgery he had 7 days ago!
Short term update: He is on an oral medication to control his heart arrhythmias and Lovenox SQ for the possible blood clot in his arm from the IV that infiltrated when he was in the hospital. His genetic test for the ARVD diagnosis is pending and will hopefully be ready when we go back to see his cardiologist at UAB the first week in July. That day he will also have an ultrasound done on is arm to confirm that the blood clot has dissipated.
Long term update: We are not sure what his limitations will be at this point. The medication will control the arrhythmia and the ICD is there as a “back up” and will hopefully never be needed. The trick will be finding a level of activity that Sam will be happy with, while not causing further damage to his heart. It has been suggested that Sam take up archery or golf.
Hard to imagine my triathlete with a golf club in his hand instead of riding a bike, but I am confident he will find something to give him an outlet for his competitive drive, and as Dr. Morgan and several others have told him, it is obvious that God is not through with him. Sam, as well as the rest of us, is here for a purpose, and I am looking forward to the future to see where God is leading him.
Facebook Post, June 22nd
Sam update: Sam wore a Holter monitor (portable EKG) for 24 hours one day last week to see how the medication is controlling his heart arrhythmias. Unfortunately, the results didn’t come back as well as we’d hoped, so they’ve had to increase the dose of the medicine. Good news, however, he is asymptomatic and never feels the PVCs or the runs that he is experiencing (and it hasn’t gotten close to the settings that the ICD is on, so no, he hasn’t gotten “zapped” by his defibrillator). He was, however, experiencing some orthostatic hypotension (dizziness due to blood pressure changes when he stands) at the lower dose of medicine, so I wasn’t excited about the need to increase the dose, but he is taking it all in stride.
Another bit of good news… a follow-up ultrasound of his arm showed that the blood clot problem has cleared up enough that he was able to stop taking the Lovenox a few days ago. He was a good sport about it and even let a younger brother or two give him his injection (funny what little brothers think is entertaining).
Still no word on genetic testing. We hope that the results will be back and that we will be able to discuss the results with the geneticist at UAB when David, Sam and I go up to Birmingham in a few weeks for Sam’s follow-up appointment at The Children’s Hosptial. At that point, he will be 6-weeks post op and will be released to enjoy his new list of activities – among the suggested ones are – “billiards, bowling, cricket, curling, golf and riflery.” David can’t hear the list without laughing at “cricket and curling.”
Sam has been very active in Civil Air Patrol (CAP) for about 5 years now. This week he’s at an encampment at Fort McClellan where he is an Executive officer. He’ll be over all of the cadet support functions and will be managing logistics, public affairs, and other non-training functions for the cadets. He left yesterday and will be gone until the end of next week. We’re busy planning Sam’s school schedule for his senior year. He will be dual enrolling at a local college for some of his classes, so he is looking forward to that! He’s also going to be looking for a job when he returns from the CAP encampment and gets his official “release” from the doctor the next week.
Time to return to our normal lives… our “new” normal. And we’re so blessed and thankful Sam is doing so well! Your thoughts and prayers are still very much appreciated.
Facebook Post, June 27th
It’s been 6 weeks since Sam suffered from his Sudden Cardiac Arrest (SCA). I’m still hearing new stories of how this had impacted others and have a favor to ask of anyone interested in participating… Obviously this has been a life changing event for Sam and our entire family.
I realize how it has affected many of you, too. If you’d like to write down details to share with Sam.. How you found out, if you were there, details that you remember, how it affected you spiritually, anything you’d like to share… big details and little details are all welcome. I’d like to compile this in some way to give to Sam. Please private message me. You can send via email, Facebook, snail mail, if you’d like to hand write something. Just lmk if you need my email address or our home address. (This is an offer that doesn’t expire, so if you are reading this now and want to send Sam a note, you can contact Sam at Sam@heartforathletes.org)
Sam’s 17th birthday is a few weeks away and the fundraiser that Jenny has been planning is just around the corner, too. I will plan on giving him something on one if those occasions, but can add your note/letter/words of encouragement at any time. As I’ve mentioned before, the texts, phone messages, Facebook messages – all the ways that you contacted me those first few days – meant the world to me. Thinking back to that entire hospital experience, I seemed numb to a lot of emotions, but I did read and re-read each of your messages and they meant the world to me.
I think now those words of encouragement will mean the world to Sam.
Facebook, July 11th
Lenise Ligon, Fox 10 News, and Sam!
Great report on the Fox 10 story on Sam! There were a few minor details that were a bit off… CPR was done for 20 min, not 10. He was sedated in ICU for just 2 days, not a week. And although I wish we were going to Johns Hopkins to seek a cure, we are going for a consultation to discuss management and treatment with them because they are doing extensive research on ARVD.
Facebook, July 12th
I just got this message from Lenise Ligon: “Sam’s story was the most popular story on the web last night with 2,076 page views as of this afternoon. A lot of people now know Sam’s story, and we are also mentioning it again during our 4pm today.” Wow!
Facebook, July 13th
Celebrating a Miracle – Fundraising Event planned by Jenny and Darrel Williams
Sam met some of the firemedics/paramedics that helped save his life!
Facebook, July 16th
Sam will be the “Face of Heart” (survivor speaker) at both the Mobile and Baldwin County Heart Walks this year. Our family will be walking as team Survivor Sam in the Baldwin County walk. We hope that you will sign up today to join us!
Facebook, July 26th
To all my neighborhood friends: Jeff (Sam’s youngest brother) is organizing a lemonade stand today. We are walking in the Heart Walk for AHA this year and this is how he decided he wanted to raise money. He will be on the corner of Azalea Ct and Pine Run about 3pm this afternoon. We hope to see you there!
Notice that the sign says, “Water free for Runners”! He raised $201.60!
Facebook, August 17th
Sam’s genetic test came back… Negative for ARVD. They’ve decided to tests for more 23 more arrhythmia causing genes, including Long QT and Brugada Syndrome. Six to eight more weeks of waiting. In the mean time, they’ve decided to do further testing on the other children to make sure they do not show signs of ARVD. Four lucky kids got Holter monitors yesterday and wore them for 24 hours… They thought they were fun for the first few hours, but happily took them off this afternoon. Incidentally, this does NOT mean Sam’s diagnosis is not correct. Only that perhaps the gene that caused it hasn’t been identified yet, or that Sam’s case was caused by a gene mutation. We are in the process of planning a trip to Johns Hopkins now. They are doing extensive research on ARVD, so it will be good to see them when they have seen so many patients with this condition. _________________________________________________________________________________________
That was it for Facebook posts for a while as we got back into our school routine for the year. We had a few bumps along the way concerning a couple of other family members. Because ARVD is a genetic condition, all five of the other kids, plus hubby and I, wore a Holter monitor for 24 hours and had an echo (ultrasound of the heart) done. My husband, David, had abnormal Holter results (a possible electrical problem) and Nic, my 12yo son had an abnormal echo, showing a slight enlargement of his right ventricle (a possible structural problem). We already had Sam’s appointment and they were able to fit David and Nic in at the last minute for clinic appointments, also. So, on September 16th, David, Sam, Nic and I flew to Baltimore to see ARVD folks at Johns Hopkins.
Originally, I wanted to go to Johns Hopkins to simply confirm Sam’s diagnosis. All of the doctors we had met along the way were great, but it never hurts to get a second opinion. So off we went. Nic and David had cardiac MRIs done, and all three had a signal-averaged EKG (a more detailed EKG) done. After the doctor reviewed all of their records, Sam’s diagnosis was confirmed and David and Nic were told that their tests did NOT confirm the ARVD diagnosis. Before Sam’s SCA in May, he said that he only felt his heart race during extreme exertion. From what he told us, he’d only experienced it during swimming. Never during running or biking. I mistakenly thought that this meant that as long as he didn’t swim, he wouldn’t experience the arrhythmia again. We learned a lot when we went to Johns Hopkins. ________________________________________________________________________________________
Facebook Post, October 17th
So it’s been a long five months since my vocabulary expanded and I learned acronyms for things like SCA, AEDs, ICDs, ARVD and all about procedures like cardiac ablation, Holter monitors and cardiac MRIs. Many of these things I was vaguely aware of, but now they have become a part of my daily vocabulary. I can even spell “arrhythmia” now without spell check. Well. Most of the time.
Not a day goes by that I am not keenly aware of the miracles that took place on May 15th when our son’s life was saved by the events God orchestrated. Sam has handled the changes thrust upon him just as those who know him might predict that he would. Stoically. Matter-of-factly. But most amazingly, gracefully. Our days have been filled with lots of doctor’s visits, phone calls and WAITING. But Sam has settled into a new routine of work and school and I know that many of you have been waiting for a while for an update, so here it is.
Sam is finishing his Senior year of high school this year. He’s working as a swim coach for the swim team he was on and finishing up his course work at home and through dual enrollment at the University of Mobile. Graduation will be on May 17th. A significant day indeed. May 17th will be the 1st anniversary of the day he was flown to Birmingham in the wee hours of the night, the day that he was extubated, and the day that I sent out those first pictures on Facebook of Sam sitting up in a chair in his CVICU room at The Children’s Hospital. The day I could breathe again and really feel like, “He’s going to be okay!” It will be a day to celebrate!
Medical update: We traveled to Johns Hopkins in September to meet with the professionals who lead the ARVD program in Baltimore. When Sam’s ICD was interrogated (ICD activity was downloaded), they discovered that Sam had been “paced” twice in the previous few weeks. This means that the ICD detected a fast rhythm (Vtach) and delivered a series of rapid pacing impulses to override the fast rhythm and correct it. A precursor to an actual shock from the ICD. The pacing was successful and brought Sam’s rhythm back to a normal. He did not feel this and did not know that he had been “paced.” The doctor predicted that Sam would receive a defibrillation shock within a few months and he recommended doing an ablation procedure.
The ablation procedure attempted in May, but without success, was an endocardial ablation. The ablation that they have recommended at Johns Hopkins is an epicardial ablation. The damage to the heart that occurs in ARVD patients starts on the outer surface of the heart and spreads toward the inner surface, kind of like roots of a tree. Therefore, epicardial ablation is successful in ARVD patients because the damaged area is more easily identified by a focal point when looked at “from the outside.” A catheter is placed in the chest wall and goes through the pericardial sac and into the pericardial space. The electrophysiology of the heart is then “mapped,” the areas that need to be ablated are identified, and then eliminated by cauterization.This procedure takes between 6-8 hours, depending on how long it takes to map the heart. Patients remain in the hospital overnight and are generally discharged the next day. Sam is scheduled to have this procedure done on October 24th.
Unfortunately, the doctor’s prediction was “spot on” and Sam was shocked by his defibrillator on October 12th. Sam never felt dizzy or lightheaded before and did not loose consciousness. Ironically, his athleticism caused the damage to his heart, but also allows him to have a heart rate of 280 bpm and not even get dizzy! As you can imagine, October 24th cannot get here soon enough for me. Sam is taking it all in stride. He continues to amaze me. After the epicardial ablation, if all goes as planned, he will be discharged on the 25th and we will fly home. He will no longer be taking the current medication he is on (sotalol 120mg BID for my medical friends), and will be put on a “milder” med with less side effects (yay!) (Toprol XL QD).
Attention relatives: To those genetically related to Sam (especially if you are athletically active), let your doctor know that you have a relative who has been diagnosed with ARVD. Also of significance if you are from “David’s side” – one of Judy’s brothers (Judy is Sam’s paternal grandmother) died at the age of 27 from an unexplained heart condition.
To all of our friends who are athletes: Unexplained dizziness, shortness of breath, fainting, racing heartbeat, should all be taken seriously. Please go to a local heart screening if offered, or go to a cardiologist for a check up.
Thank you again to everyone who donated to the Fundraiser that Jenny and Darrel organized for us. Both of our trips to Maryland have been taken care of, thanks to you. That has been a huge blessing.
So what will the future hold for Sam? ARVD is a progressive disease. The ablation is not a “cure”. Exercise for an ARVD patient will accelerate the progression of the disease and can provoke arrhythmias. But having the ablation will mean that Sam can enjoy normal activities without having to worry about getting a shock from his defibrillator. While he can never participate in routine training or competition again, he will be able to enjoy a long normal life, enjoying physical activities on an occasional basis. As his doctor said, “You can play an occasional game of tennis. You can’t be on the tennis team.”
In a pamphlet from Johns Hopkins, I came across a compelling quote from an ARVD patient: “After living with ARVD for more than a decade, I know I am a better person. My perspective and priorities have been changed in a profound and positive way.” My prayer for Sam is that when he is reminded in his adulthood of the events of this year, these words will also hold true for him.
Blessings, Amy and David
Sam spoke as the “Survivor Speaker” for the American Heart Association’s Heart Walk tonight in Baldwin county. He also spoke at the AHA Heart Walk in Mobile county last month and at a few planning meetings for the Heart Walk over the summer. Since he’s very comfortable with public speaking, he of course did a fabulous job!
On our way to Baltimore for epicardial ablation procedure to be done at Johns Hopkins in Baltimore tomorrow.
Facebook Post, October 24th
Arrived at hospital early this morning. Everything is going right on schedule. CT was right on time and they took him back for the procedure right on time – about 25min ago. I’ve been asked about 5 times for my phone number and we’ve been told that they will update us every couple of hours. We didn’t meet the doctor doing the procedure until this morning. We liked Dr. Tandri a lot. Same with pre-op nurses, OR nurse and anesthesia folks. All were great. He’s in good hands.
First update: Doctor just called and said that Sam is doing great. They have the cardiac catheters in place and are mapping the inside of the right ventricle now. Everything is going as planned and he will call back in a few hours for another update.
2nd update: Still at least “a few hours to go.” No new news. This is good. Slow and steady progress. Update board has finish time as 1700, but hopefully it will be sooner.
3rd update: They’ve identified the area that needs to be ablated. It was where they expected it (from previous tests done, and what it typical of ARVD patients). Ablation is about to start. He should be finished in 60 to 90 minutes.
4th update: nurse just called us for update. He said Sam is comfortable and stable and ablation is going well, but he thought it would still be another couple of hours.
Finished! The doctor came out to talk to us a few minutes ago. The damage was around his tricuspid valve, just as he suspected it would be. The area of damage was small, and within that area, there were several irritable spots. He was able to ablate all of them. The inside of his heart was normal. Again, just as he suspected it would be, and is typical of ARVD patients. When they initially took Sam back, they had him only under mild sedation so that they could better identify the irritable areas. He said Sam was a “cool kid” and thought he’d be “freaking out.”
That’s our Sam!
Thanks again for your prayers! They have once again comforted us and we are thankful for all of you!
Facebook Post, October 25th
We are going home today! Flight leaves at 7pm AL time. Yay!
The doctor said that the pain would be its most intense last night and today. It is due to the inflammation around his heart and is controlled well with NSAIDs.
I had imagined all of this time that the the entire outer surface of Sam’s RV must look damaged, but actually, the area was all contained in one very small portion around his tricuspid valve. Within that area, there were three smaller zones that were causing his PVCs. All three were ablated yesterday. While I’m sad that Sam will never be able to compete competitively in sports again, I am thankful that this problem, now that the arrhythmias are under control, does not affect the pumping function of the heart. While “normal” has been redefined for him, he will be able to lead a normal life. Normal. I like that word. At least in this context.
Sam was fearfully and wonderfully made and we are so thankful today for his “normal” life. Psalm 139:13-15
We arrived home at midnight at Sam woke up the next morning and took the ACT test. Of course we didn’t know when he registered for it that he would have this ablation procedure two days prior, but it just shows you what a tough young man Sam is. He continues to amaze us.
Facebook Post, October 26th
So I have to share the funniest thing that happened on our trip, and how safe you should all feel with the TSA security at our airports. When we were going through airport security last night in Baltimore, they had the clear-glass-telephone-booth-looking scanners. I had purposely gotten just ahead of Sam in the line so that I could look back and see the image that they saw of Sam on the screen, b/c so far, he hadn’t “set off” any of their security devices with this ICD. I went through and looked back just as Sam exited and a TSA agent asked him to step to the side.
(If the scanner detects something suspicious, it will display a generic outline of a human figure with the suspicious item indicated by a highlighted box. If the scanner finds nothing, it will display the word “OK.”)
When he had Sam step aside, I thought, well, he’s finally set off a device! So… then TSA agent proceeded to pat down his right shoulder area. The LEFT shoulder is where his ICD is, and what flashed as being “suspicious”. lol!
Facebook Post, October 31
Glad Sam has a sense of humor about all that he’s been through this year!
Sam, dressed as a patient, with his girlfriend, Olivia, the doctor. Ready to go trick-or-treating.
Facebook, November 30th
Introducing: Cadet Colonel, Samuel Cockrell. We are so proud of him!!
“The General Carl A. Spaatz Award is the highest award in the Civil Air Patrol cadet program.
The Spaatz Award may be awarded to cadets who “successfully complete all phases of the CAP cadet program and the General Carl A. Spaatz Award examination” consisting of a comprehensive leadership and aerospace education written examination, a graded essay and a physical fitness test.
The Spaatz Award is arguably the most difficult honor to earn in the CAP cadet program. Since its inception in 1964, there have been about 1,900 recipients. On average, 2/1000 cadets earn this honor.
Cadets earning Spaatz Award are also promoted to Cadet Colonel, the highest grade obtainable in the cadet program.”
Congratulations to C/Col Samuel Cockrell. He passed his Spaatz Exam this morning in Dothan, AL.
Journal Entry, December 1st
Sam took the Spaatz exam two days after Thanksgiving. It would have difficult under normal circumstances to concentrate and be prepared for a big exam at the end of a holiday week, but what I left off of Facebook was the fact that Sam was shocked again by his ICD the day before Thanksgiving, just three days prior to the exam. We were at the beach for the holiday and he’d gone down to the beach to watch the sunset. Since it was cool outside that evening, he jogged back up the boardwalk to the house. When he got in he the house, he was shocked. We didn’t know what to think because we knew that the ablation that he’d had done almost five weeks prior should have prevented that. He had tapered off of his pre-ablation meds and was on low-dose toprol XL. His meds were increased and he followed up with his Mobile doctor. He wore another Holter monitor for 24 hours in December and that test showed that the increased meds seemed to be controlling the arrhythmias. The Johns Hopkins doctor told us that perhaps there was more healing to be done as complete healing could take up to 6 months. More waiting.
Family Picture, December 15
The Cockrells, Christmas Card Picture 2013. Our cards simply said, “BLESSED”
Journal Update, December, 2013
Parent Heart Watch (PHW) contacted me for the first time after Fox 10 aired Sam’s story in July of 2013. When I saw their video for the first time and saw the work they were doing, I knew that I wanted to bring heart screenings to Baldwin and Mobile counties in Alabama. In March of 2012, 14 months before Sam’s SCA, I took Sam to a doctor for a physical exam and asked specifically about his heart health. I said, “You hear about athletes dying of heart problems. I want to make sure that Sam is okay because of the amount of training he is doing – if anyone were susceptible, it would be someone like him.” The doctor listened with a stethoscope, finished his general exam and said that he was “fine.” I left with an uneasy feeling, but didn’t know what else to ask. I wish I’d seen this poster from Parent Heart Watch before that appointment. I wish I had insisted on an EKG. An EKG may have picked up an abnormality. It may not have. I will never know. I do not hold any hard feelings against the doctor as he was just following current standard practices, but it makes me want to strongly be an advocate for the changing of those standard practices.
In December, I talked to Martha Lopez-Anderson from PHW for the first time. After a long phone conversation, she gave me the encouragement I needed to make me feel like I could indeed bring heart screenings to our area. All I needed now was a doctor who was interested in doing heart screenings. In February, that fell into place at the GoRed luncheon for the American Heart Association in Mobile, when I was seated next to Sam’s first pediatric cardiologist, Dr. Lynn Batten. When I mentioned the idea of heart screenings to her, she told me that she had already considered the idea for young athletes. We exchanged contact info, and “the rest, is history.” Knowing that I had a doctor to support the idea, I quickly made plans to attend a heart screening near Orlando for Martha’s group, Saving Young Hearts. I wanted to observe a screening in progress so that I could more easily replicate the process in our area.
Facebook Post, February 22, 2014
Amy Cockrell and Martha Lopez-Anderson at Saving Young Hearts heart screening in Orlando, FL
Two moms. Two sons. Two SCAs. Two very different outcomes. This wonderful mom I met today lost her son to SCA ten years ago. Thanks to her tireless efforts, lives like my son Sam’s have been saved. Through her organization, Saving Young Hearts, she and her team of volunteers screened 99 kids for cardiac problems today. Only half way through the day and three kids have been identified as potentially having serious heart issues that need follow up.
Journal Update, February, 2014
Dr. Batten and I had our first meeting shortly after the heart screening in Orlando. We set our for screening date for August 16th. The USA Children’s and Women’s Hospital quickly offered us clinic space, and through Parent Heart Watch and a program offered by Mortara, we secured a loan of several EKG machines to be used at the screening.
Sam’s life had reached a new normal. He was coaching swim for the local swim team that he previously been on. In January of 2014, he started his first semester at the University of South Alabama, majoring in mechanical engineering. He jumped right in with a full load, joined the Student Government Association’s First Year Council and became a “Southerner” – a group of 16 students chosen to be the official ambassadors of the University of South Alabama. David and I were so proud of how he had adjusted to his “new life.” Until May of 2013, his life was consumed by athletics, and we worried about how he would respond to having something that he loved so much abruptly being taken away, but he had shown us that he had adjusted quite well to the routine of his new life.
In February, he had the opportunity to go to Washington D.C. with the Civil Air Patrol to attend their Civic Leadership Academy. While attending this academically focused learning experience, he attended seminars, did group projects, and was taken on behind the scenes tours at the Capitol, Supreme Court, State Department, Pentagon, CIA, and Arlington National Cemetery.
While in D.C., Sam met with AL Rep. Bradley Byrne. In a picture that we received the week after the visit, Rep. Byrne wrote the phrase, “You’re an inspiration to us all.” How ironic are those words? I don’t think that Rep. Byrne knew anything about what Sam had been through medically the year prior to their meeting. And just a few weeks after their visit, there would certainly be no doubt that Sam would become an “inspiration to us all.”
U.S. Rep. Bradley Byrne (1st Alabama) with C/Col Sam Cockrell last week during his trip with the Civil Air Patrol’s Civic Leadership Academy in Washington, D.C.
Journal Entry, Tuesday, March 18, 2014
My phone rang at exactly 3:30pm. Sam’s picture came up as the contact, but it wasn’t Sam who was talking on the other end of the phone. The person identified himself as a friend of Sam’s and he said they had just walked across campus and up several flights of stairs when Sam started getting shocked from his ICD erratically, every 30 seconds to a minute in between shocks. I told him to call 9-1-1. I was across town and I ran to my car, and started driving to the hospital in Mobile. I was nervous, but not panicking. Never in a million years could I have imagined what was about to happen. The very first time Sam had gotten shocked in October, he had received one “therapy” (shock) and just as a precaution, we went to the ER to make sure he was fine. When we met him there, he looked like my normal Sam and, although he was a bit shaken up, he was fine. The day before Thanksgiving when he’d gotten shocked a second time, we hadn’t even gone to the hospital. He was fine after the therapy and were told that we could just wait and come to the office on Monday. This time, I was concerned because SAM didn’t talk to me, and although his friend told me that he was alert and talking to him, I was worried because I knew he’d gotten shocked more than once.
As I was driving to Mobile, I called the ARVD counselor at Johns Hopkins who I’d been in contact with, and asked if I’d done the right thing by having them call 9-1-1. She assured me that I had. I continued on to Mobile thinking that when I saw Sam, he would be alert and talking to me, just like the last time.
I arrived at the hospital just after 4pm. Sam’s girlfriend and her mom were already there. David arrived shortly thereafter. Sam was already in the ER. I saw a paramedic, I think. I asked if I could see Sam, and I remember the look on his face – like he wasn’t sure what to say. I asked something along the lines of, “Is he alert? Is is talking?” I think he said, “They are working on him.” I’m not sure if “CPR” was said, but somehow I knew something was terribly wrong.
Dr. Tandri from Johns Hopkins called for an update about 4:15. He told me later that when I told him they were doing CPR, he thought he’d misunderstood me. I cannot express my gratitude for the people in the ER at Springhill Hospital that afternoon. The minutes kept ticking by and I kept thinking that they couldn’t still be doing CPR – surely he was doing better and we just weren’t getting updates. But no, they were still doing CPR. For 65 minutes they did CPR. At some point I called Dr. Batten and she immediately came from another hospital across town (and even got pulled over by the police for driving too fast) to be with us. She stayed with us for a few hours that night and was our liaison between the doctors working on Sam and being our information source. After they did finally get Sam’s heart beating, his blood pressure was so low, they had to take him to the cath lab to put in a special heart pump. Dr. Tandri later told us how impressed he was with the care that Sam received at Springhill and that they (Johns Hopkins) couldn’t have done a better job.
Because so many people were already aware of the situation Sam had been in in May, when I called the first few people when we were in the ER to ask for them to pray for Sam, they immediately realized the seriousness of the situation and word spread like wildfire. I’m convinced those prayers made a difference and were the beginning of Sam’s miraculous survival.
Facebook Post, Wednesday, March 19th
Sam started at the University of South AL this semester. He was there today on campus when his ICD (defibrillator) shocked him repeatedly. A friend was with him and he called me and I told him to call 911. Once the paramedics arrived and they had him in the ambulance, he went into a full cardiac arrest. When we arrived at the hospital, we found out they were doing CPR on him. Apparently his heart was in at ‘vtach storm’ and although the device would correct the rhythm temporarily, it would quickly digress back to v tach. They continued CPR for over an hour. When they did get the rhythm back, his heart was not pumping well enough, so they took him to the cath lab where they put in a temp device (Impella) to pump the blood for him so
his heart can rest. They have cooled his body temperature to 91.3 degrees and will keep it at that temp for 24 hours. At that time, they will slowly rewarm him (it will take about 16 hours). It is hoped that this will decrease the chance of neurological damage.
The doctors have been amazing. His Johns Hopkins doctor first called me at 3:37 pm and has been following him closely by contacting the doctors here and keeping in touch with David and me. The pediatric cardiologist who first followed Sam in May also came to be with us. She say in the waiting room and went back and forth to Sam and us to keep us updated. The current plan is to access his neurological function in 36-48 hours and then fly him to Baltimore.
I have so many prayer requests. At the top of the list now is to please pray that there are no bleeding problems as they rewarm him. No neurological damage.
Thank you for each of your texts, calls, emails, and visits. I read and reread them all. I’ve listened and relistened. I love and appreciate each of you.
Quiet night. BP was stable through the night. Should be a quiet day. Critical time will be tonight at 7pm when they start to normalize his temperature. By this time tomorrow we will have a better idea about his neurological function.
Thank you for your prayers. They mean the world to us right now.
Not knowing is the hardest. When he went through this in May, I saw him in the ER after the SCA, but before they sedated him. I knew I saw “my Sam” when he looked at me and I talked to him. The doctors didn’t believe he was “okay” until later, but I knew. My heart was calm. This time, they had to do CPR much longer, and I did not get to see him before sedation. There are so many unknowns at this point. From where he will be neurologically to how his heart function will be. Thank you for your prayers. They will start warming him and weening him off the drugs tonight. It is going to be the longest night of my life.
Journal Entry, Wednesday, March 19th
During the day, a dear friend started a 24hr prayer sign up that was scheduled to start at 7pm on the Wednesday night that they would start the re-warming process on Sam. This was supposed to take about 24hour, so it would end at 7pm on Thursday. There were three specific prayer requests: 1) No neurological damage 2) no heart damage 3) complete healing.
She said that it filled up quickly, even the middle of the night times. I had a couple of dear friends who came and spent the night in the waiting room with me that night. Sam was at the hospital for six nights, and the waiting room was packed the entire time.
Facebook Post, Wednesday, March 19th
Sam’s medication list. Insulin, amiodarone, Propofol, fentanyl, NS, heparin, rocuronium, vasopressin, KCl bolus
Body temp. 92.5 F
92.3 F – that was about 45min ago when we saw him last. Yes, that went down. It has been fluctuating a lot, but this is expected. Looking at the trend. We will check on him in a few more hours.
Facebook Post, March 20th
They asked David and I for consent to give blood several hours ago b/c Sam’s H/H and platelets had dropped. DIC was mentioned and I zoned out after that… I don’t remember much of what was said b/c that would be such a serious complication. HOWEVER. They doctor suspected that that may have been erroneous levels and redid the tests. Twice actually, over the last few hours. Both of the later tests came back better. Praise God!
They started rewarming him at 720 pm. We were with him from 830 until about 11. It fluctuated back and forth and was at 92.3 when we left. His nurse said that he would let us come and check on him during the night.
Last report – they do not think he will be extubated tomorrow. They are going to take him back to the cath lab and take the Impella device out. More waiting. Will report on neurological status as soon as I have any news.
Thanks to everyone for there thoughts and prayers, visits, hugs and gifts. I know from all of the notifications popping up on my phone that a lot of you are up praying for him now. Thanks to all my night owl friends for visiting and staying tonight, too.
We are experiencing that peace that passes all understanding.
I do not have a temp to report now. We have not been back there in a couple of hours. From the last lab work done, kidney function seemed okay.
This text is from Sam’s doctor at Johns Hopkins: “He is breathing over the vent and has sluggish but preserved pupillary reflex. All good so far. Need to see purposeful or spontaneous movement once warm and off paralytics.”
Sluggish (hate that word!) pupils could be due to hypothermia and sedation meds, so is actually a good sign.
One of the cardiologists just came to talk to us. He said that his last blood work came back good. Magnesium was a little low and they wouldn’t even replace it normally, but since v tach is an issue, they did. Vital signs are strong and heart rhythm is good, so those are all good signs. They don’t expect body warming to be done until late this afternoon. That’s when they will ask his to “wiggle his toes” and decide for sure if they will take the Impella out.
“All is going as well as can be expected.”
Please pray for a calm spirit for Sam as he becomes aware of what it going on. Anxiousness and adrenalin are not what he needs when his body has been through so much.
Thankfully, Sam is a very calm person. Here’s a story I’ve been meaning to share, and will show you Sam’s calm spirit… The friend who was with him when he experienced the vt storm came by to see us. He estimated that Sam was shocked 20 times while he was with him and before the paramedics arrived. He would get a shock and then it would be 30 seconds to a minute and he would get another shock. His friend knew nothing about Sam’s condition. When Sam got shocked the first time, he told him he needed to sit down. Between the shocks, he explained his condition to Caleb and even pulled the card out of his wallet that gave the specifics of his ICD device. He told Caleb to give it to the paramedics and told him what they’d need to know about his condition. The shocks became so painful that he had to lie down, but he was conscious the whole time, even after the paramedics arrived. He didn’t lose consciousness until in the ambulance. He was shocked by his device 43 times. I don’t know how many during the hour of CPR.
They decided to take the Impella device out in his CCU room. The sheath is still in and they will take him to cath lab later to remove it. Temp is 94.6 degrees. Echo just showed that left ventrical function went up from 14 on Tuesday to 40 today (not positive on numbers, but a great improvement). Right ventrical not so good. Was moderately depressed after May. Moderately to severely depressed now. Color is good. Pulse in both legs (they did not have a pulse in right leg when impella was placed). Liver enzymes slightly elevated, but not unexpected considering what he’s been through. Lots of blood in urine, but again, they are not surprised due to trauma his body went through, the placement of the Impella, etc. Kidney fxn okay according to blood work. Platelets 107. H/H wnl.
Prayers are working.
Playing worship music for Sam (thank you, Casey, “Always” is on a continual loop) while we watch Facebook messages and texts light up the phone, reminding us that all of you are going through this and standing with us and believing our prayers will be answered.
Temp 96.5. Zemuron (paralytic) stopped. Will take 3 hours to get out of his system. Then will wean fentanyl and diprovan. PICC line placed. Took him to cath lab to remove sheath in femoral artery from Impella. Clot was there. They had a surgeon on standby and he did a cut down. Suctioned out, sewn up. Blood flow checked and pulse good in leg. Back in CCU. Pulse in foot now. I am holding his foot and praying over each beat.
Journal Entry, 7 pm
Sam’s nurse came out and said that David, Olivia and I could go back and see him. She had done a neuro check on Sam at 6pm and did not get a response. At 7pm, it was shift change, and she thought she’d try one more neuro check before she left for the night. She didn’t expect anything… but HE RESPONDED! The waiting room was right around the corner so she came and got us. She’d told us earlier that the paralytic would take about 3 hours to wear off – and that’s just about when he responded. 7pm is also when the 24 hour prayer chain ended. God has impeccable timing. We heard so many sweet stories of the kids from the swim team who knew Sam as “coach” and kids from our homeschool community who were impacted by Sam’s story. Those stories are all precious memories to us now.
I did not post anything immediately on Facebook because I wanted to call a few people and tell them myself. I think that’s when it really struck me exactly how many people had been impacted by Sam’s story. Kathryn, my friend Georgeen, David and I were all calling and by the time I called the second person, it was old news to them. I couldn’t believe how fast the word was spreading.
Facebook Post, 8:16 pm
OUR MIRACLE HAS HAPPENED! The nurse came out (smiling!) about an hour ago and asked that we go back to the room. It wasn’t visiting hours, so I was praying that smile meant what I hoped it meant… and it did! He is shaking his head “yes” and “no” and is squeezing our hands to reply to questions. He had a tear rolling down his cheek. LOTS OF THEM BEING SHED RIGHT NOW! We are taking one moment at a time… quite literally. The next step will be to determine what to do about the condition of his heart and get to the bottom of what happened Tuesday. What caused the v tach storm? Please pray for wisdom as we address this next hurdle. I’m sure that will be the hot topic in the morning, and if we will stay here or go north (to Johns Hopkins).
Facebook Post, Friday, March 21
I just spent two glorious hours holding Sam’s hand. We were all standing up around his bed. Olivia had one hand; I had the other. Her hand got a few more squeezes than mine, but that was fine with me. We told Sam how we’ve been playing music for him (thank you again, Casey!!) and played “Always” (the Kristian Stanfill song) for him. As I listened to the lyrics tonight, I rested my head on the side of the bed and smiled. I wasn’t even thinking about the fact that I was smiling until I remembered that when I listened to the same song the night before, holding Sam’s hand and resting my hand on the same bed rail, I was crying. I cried, but it was comforting at the same time b/c I was able to imagine Sam standing in church with the rest of my family with his arms raised in worship. I just prayed that we would be able to do that again one day again VERY SOON.
Then the sweetest thing happened this afternoon when I was with Anna and the other kids having our picnic lunch. I told Anna all about how Sam was doing, and one of the things I mentioned was that we’d been playing music for him. I asked her if she wanted to hear the song we’d been playing for Sam. She said yes, so we listened to it together. When it was over, she told me that she just wanted to go to church and stand by Sam and sing that song. Mom and little sister with the same prayer request. Pretty cool.
There’s still a long, unknown road ahead, but God blessed us tonight in a huge way with this first major hurdle Sam had to overcome. The doctors have been cautiously optimistic, but none of them even cautiously suggested that he would be responding as quickly as he did once his temp was normalized.
My guess is that tomorrow, lots of big decisions about what to do next will be addressed. Please pray for divine wisdom for the doctors and our family.
I should give you more details of Sam’s condition – he is still intubated. Has all kinds of tubes going in and coming out of him. His color is good, but still a tough site to see. He’s still on the Diprovan drip (low dose) and he is mildly sedated. It would be impossible to tolerate the tubes if this weren’t the case. We asked if he was in pain. He just indicated that his throat (the tubes) were bothering him. His right arm is very swollen from the shoulder to the hand from an IV infiltrate. Although minor in comparison to what he’s been through, it is still hard to look at because I’m wondering how much it will bother him when he is more alert. When his IV infiltrated in Birmingham in May, it was very painful and caused his discharge to be delayed by several days.
But the happy news! – he definitely knows who we are and will nod his head or squeeze our hands appropriately when asked questions. There’s a line in the Always song that says, “I lift my eyes up, my help comes from the Lord.” When Sam heard this line, he opened his eyes. Pretty exciting confirmation that he is doing just fine, neurologically speaking.
I am exhausted. I’ve been fine up until the past couple of hours. I think the relief of knowing Sam is doing better has allowed me to relax.
Visiting hours about to start again, they let us see him for a short time immediately after extubation. He is pretty uncomfortable – his throat hurts a good deal, but he’s not complaining of pain from any other area.
Plan is already being set in motion… if he continues to be stable tonight, they will move him to a regular room over the weekend. Decision has been made to go to Johns Hopkins on Monday. Sam has a long road ahead of him. Don’t stop praying. First hurdle over at least. I’ll give more details of the plan after visitation.
Okay. Here I go with an update. I’m out of my league on a lot of this, but I will try and do my best to explain.
Short-term update: His ectopy is being controlled with amiodarone and electrolyte supplements. I’m typing this in his room while he is sleeping. He was having lots of PVCs (ectopy, irregular beats, etc) but they increased his medication and gave him a KCl jump. Things quieted down quickly. Kind of neat to see the medications work like that. The cardiologist said that we might be able to transfer him to a regular room tomorrow, but the critical care doc said that he was staying put! He will remain in CCU until he is transferred to Johns Hopkins – the current plan is to have him flown up there on Monday.
Long-term update: David and I talked to Dr. Tandri (the Johns Hopkins doctor who did the ablation in October) at length this morning. He has been in contact with the doctors here from the moment I contacted him – while Sam was still on the ambulance and on his way to the hospital. All through this, I’ve just wanted all of the doctors to agree on the best course to take. I did not want one saying that “A” was the best route while another suggested “B”. But, as Dr. Tandri explained it to us this morning, there are simply two choices:
1) Fix the arrhythmia or 2) Get a new heart.
To give a little background… (I’m leaving out volumes of info, just hitting highlights to get to March 18)
Sam was been diagnosed with ARVD. Arrhythmogenic Right Ventricular Dysplasia (a form of cardiomyopathy) in May following his first SCA. It is a genetic heart condition that is exacerbated with exercise. He was discharged after a 9 day hospital stay, with an ICD (internal defibrillator) and medication to control the arrhythmia. Because ARVD is rare, we chose to go to Johns Hopkins for follow up care bc they follow a large number of ARVD patients from across the country. After our first visit with them in September, they recommended an epicardial ablation procedure. He had done this done in October. We left thinking that he was “cured” from the heart damage that had accumulated up until that point. We thought that as long as Sam didn’t do any regular exercise, the damage that was done to his heart was gone and no more would develop. He could live a relatively normal life, minus strenuous cardiac activity because that would cause more damage due to the ARVD.
Imagine our scare/disappointment when he was shocked by his ICD a month after the ablation. He’d been shocked once before the ablation also. Both times it was a single shock, his rhythm was restored immediately, and he was fine. He never lost consciousness or even felt lightheaded. After the event one month post-ablation, his meds were increased and he’s appeared to be fine since then.
Fast forward to 3 days ago – Tuesday March 18th. The day our second miracle occurred. Sam was shocked, but the defibrillator did not correct the v tach that was occurring. I don’t know the time frame for sure, but he received 43 shocks in about 30minutes. When ICD therapy was exhausted, SCA followed, and 65 minutes of CPR.
So here we are, and left with the questions – Why didn’t the ablation work in October and what will be done differently this time around to ensure a successful outcome if we go to Johns Hopkins? The only alternative is heart transplant.
By looking at the three times Sam received “therapy” by his device, a pattern became evident. He only receives therapy when he is physically exerting himself. The first time, he was dancing at a wedding reception, the second time, he’d jogged a short distance, and Tuesday, he’d climbed several flights of stairs. From this and lots of other factors (that I won’t begin to try and explain), they now think that Sam has catecholamine induced arrhythmias. i.e. – These arrhythmias can only be induced while the patient is active, not while they are sleeping – or under anesthesia. Yet ARVD is still the correct diagnosis. This is a different presentation of that disease process, due to his young age. Because this type of arrhythmia is catecholamine induced, it is harder to reproduce during anesthesia, and therefore wasn’t successfully identified during the first epicardial ablation procedure. Dr. Tandri will induce the arrhythmia (they have to induce the arrhythmia while “mapping” the heart to know where the damaged area is) in a very controlled environment while he is under lighter anesthesia.
This is a “big deal” procedure. In October, there was a team of 8 or 9 people with Sam for the entire day – the procedure lasted almost nine hours. As Dr. Tandri reminded me this morning – Sam is a healthy kid – with the exception of this arrhythmia. Crazy to think that a tiny area on his heart could be causing all of this. There’s no option but to find and ablate it. If for some reason they can’t identify the area, or can’t get to it, a heart transplant is the only other option.
I think this goes without saying, please keep Sam in your prayers. He’s got a long road ahead. I don’t know a time frame of when the ablation would occur. All I know at this point is that they plan to transfer him to Johns Hopkins on Monday.
Facebook Post, Saturday, March 22
Starting a Facebook page specifically for Sam. I thought the Sam momentum would fade after the good neurological report that we got Thursday night. Instead, it is building. And for that I am thankful! I’m making a page just for Survivor Sam and will start updating here.
David and I met our three younger kids at Bass Pro Shop today. Brought them back to the hospital to see Sam. We had a fun time! Sam is doing GREAT. Had several visitors today and was able to sit up in a chair tonight. Please pray for discernment as we travel the road ahead. The immediate concern is that we are able to smoothly transition to Johns Hopkins. Plan is to move Sam Monday, but critical care transport will not be contacted until he has been declared stable and released to travel. I don’t think this will happen until Monday morning. It’s making it a bit difficult to plan our flights up there bc we don’t know if we can fly with him or even that he will definitely be at JH on Monday.
The second, bigger concern, is that there is agreement on what exactly they are treating and how to go about finding and fixing it. Too many details and story lines to explain at this late hour. I’ll wait until the plan is in motion to explain. Please continue to pray for wisdom and discernment for all of the doctors trying to figure this out and for David and Sam and I to have peace about the plan.
Facebook Post, Sunday, March 23rd
Presenting… Civil Air Patrol Alabama Cadet of the Year, C/Col Samuel Gregory Cockrell. We were supposed to be in Montgomery last night for the award ceremony, but weren’t able to make it! His squadron leaders came by this morning to present him with his latest honor.
David stayed at the hospital with Sam tonight and I went home to pack, do laundry, etc to get ready to go to Baltimore tomorrow. Three suitcase packed and ready. Traveling back to hospital now. Not sure what tomorrow will bring as far as travel plans, but I guess we’re as ready as we will ever be to begin the next chapter. Hopefully David and I will both be able to fly with Sam.
Facebook Post, Monday, March 24th
Blessings are abundant in the midst of crisis. Or maybe I should say especially in the midst of crisis.
I just want to say thank you to all of you. You’ve supported us emotionally, financially and spiritually in literally more ways that I can express. We are eternally grateful.
There is no way to repay you for your kindness and compassion. We can only pay this forward. And when we do, I want it to always be a reminder the feeling of gratefulness that I am filled with right now.
Updates to follow…
Definitely flying today. We will get a call a few hours before their arrival to pick him up. JH doctor confident David and I can both fly with him.
Trouble getting insurance pre approved. May not fly today.
Everything worked out. Ambulance will arrive by 5 to take him to airport. 2hr flight. Will land at Martin State Airport and go by ambulance to Johns Hopkins.
Plane has landed at Brookley Field. Waiting on ambulance to arrive.
Two hour flight. Leaving Brookley Field now.
We left the CCU at Springhill and arrived at the CCU at Johns Hopkins in about 3-1/2 hours. Doctor will be by first thing in the morning. We are all feeling the burden and weight of the situation. None of us want to be here… and yet we believe it is the best place to be. The seriousness of the situation is no less than it was last week – just different concerns now. Please continue to pray for wisdom and divine healing.
Facebook Post, Tuesday, March 25th
It took us a few hours to get settled in last night, but we all slept well. Best I think we’ve slept all week, actually. We are all in the same room, with very comfortable accommodations, so that was a big help. They have 24/7 patient visitation, a large room, and couch that folds into a bed and a chair that folds out. Pillow and blankets easily accessible. Snacks just across the hall, complete with a coffee machine, drinks and a refrigerator for us to store a few items. We even have our own temperature control! Just mentioning all of that for anyone worried about me and David – we are set! And we don’t plan to leave his side. We will both be here around the clock, other than than to shower, etc.
They are “chasing his potassium” – just watching his levels and giving IV boluses PRN. No PVC runs last night. Dr. Tandri told me last night that he would be in first thing this morning. David and Sam are still sleeping. I am patiently waiting.
We have a plan. Doctor talked to us for about an hour this morning and explained everything, and answered our questions. Will explain later, but short version of the plan, Sam will have epicardial ablation Thursday. Will go home Tuesday or Wednesday of next week.
This is a more technical update, and I will do the best to explain what they are going to do… This is filled with info that made sense when the doctor was talking… not sure how it will translate.
First of all, Dr. Tandri was very complimentary of the care Sam received at Springhill Memorial Hospital in Mobile. Although well intended, even CPR done in a hospital setting can have outcomes that are not good. He was impressed with all of the people involved – Sam had CPR done for 65 minutes and the care he received during resuscitation and post resuscitation was top notch. Dr. Tandri called Sam’s nurse several time through that first night for signs that he was neurologically okay. He confirmed what we all know – Sam is a miracle.
The doctor was very thorough when talking with us today. While in Mobile, a few other possibilities of what might be going on were suggested. Dr. Tandri discussed what he wanted to do this week, and went through all of the other disease processes suggested, to tell us why the other things did not fit the symptoms that are occurring with Sam. So, it was reassuring to us to not only hear his plan, but to also understand why he ruled the other things out. And most importantly… to understand why this area was missed when Sam had the ablation here in October.
The plan is to have a non-invasive study tomorrow. He will be under conscious sedation and they will provoke the arrhythmia using the leads in his heart from his defibrillator. From this info, the doctor can study the data obtained and determine more precisely what area of the heart is producing the problem.
This is different than what they did in October. During that procedure, the arrhythmias were only provoked under general anesthesia. By studying the records from Sam’s device when it was interrogated, Dr. Tandri sees a pattern from each of the three episodes where he has gotten shocked… it comes immediately after some type of physical exertion when his body releases its own natural catecholamines. When under general, deep anesthesia, these arrhythmias are suppressed and do not occur.
Sam’s case will also be presented at the faculty meeting tomorrow. The more experts looking at this, the better!
Thursday is the big day. He will undergo the epicardial ablation procedure The last time it was 9 or 10 hours long. When I asked today how long it might last (realizing there really is no answer), Dr. Tandri said, “I’ll be there.” The procedure this time will be slightly different. Instead of being under general anesthesia the entire time, they will use conscious sedation for part of the procedure when mapping the heart and identifying the places that need to be ablated, and then general anesthesia when they are ablating the area. The location is likely near the pulmonary artery. Because of the location, and having to go from general anesthesia to conscious sedation, there is greater risk of complications.
A friend is setting up another 24hr prayer vigil for Sam to cover him in prayer during this time. If you’d like to participate, it will be posted soon.
Sam will then rest over the weekend. On Monday, he will have another non-invasion study done to try and reproduce the arrhythmia. Obviously the hope is that it will not be reproduced.
On Tuesday, they will have him “go crazy” on a treadmill. If that test is passed with no arrhythmias, we are in business and will be on our way home.
We need lots of things to line up and go as planned. There’s room for complications that I don’t want to think about. He is not out of the woods by any means, but considering where we were one week ago at this very moment, I know that ALL THINGS ARE POSSIBLE.
I know that prayers are being said from all over the world. We have found much comfort in that. Please continue to pray for wisdom for the doctors and comfort for Sam. David and I have been amazed at how he’s handled all of this. It has not been easy, but his faith in knowing that he is in God’s hands and covered in our prayers has brought us all comfort.
Facebook Post, Wednesday, March 26th
Know more details about procedure today – he was an “add-on” so we didn’t know what time procedure would be. Just found out it would be soon.
He is having NIPS (Non-Invasive Program Stimulation) procedure. Another doctor just came in to explain the three different outcomes – I will just explain the ONE that we hope to happen.
They will use his defibrillator to provoke the arrhythmia. The device has two therapies available – a pacing therapy (tried when device first detects V tach or V fib) and the well-known ‘reboot’ therapy where a shock occurs, wiping the electrical slate clean in the atrium and ventricle. They will use a specific pacing sequence to “tickle” the heart and try and provoke the arrhythmia.
Please pray that the arrhythmia will be induced with the leads in the defibrillator, and that it is monomorphic VT which is treatable with the ablation procedure tentatively planned for tomorrow.
They just took him back to the procedure room.
Monomorphic. That’s the word we wanted to hear, and that’s what they found. Dr. T has looked at the V tach that was recorded on Sam’s ICD during his three previous shocks, the VT that occurred once (and disappeared) the morning of the last ablation in October, and what they were able to reproduce today. Because the the amiodarone drip he has on board now, the rate of the VT they induced today was slower, but he showed us the EKGs and we could see for ourselves that they look the same. The amiodarone will be discontinued now so that the heart will be excitable during the procedure. There is a possibility that the ablation will not be tomorrow. A room was reserved, but the personnel needed are not available. If the procedure is not tomorrow, they will use the interim time to further find/confirm the target area, so all is good.
The ablation will start at 930 Friday morning (830CST). The room was available tomorrow, but the team members Dr. T wanted were not available. However, all is set for Friday. The interim time will be used to study/confirm the target area. When I asked how confident he was that he could find the area, I was told, “I can definitely get this.”
He still has the same diagnosis -ARVD (Arrhythmogenic Right Ventricular Dysplasia), resulting in damage to the surface of his heart. The electrical impulses do not travel properly over the surface of his heart. The doctor needs to find the area of the heart that is damaged (an area likely only a centimeter square), and ablate or cautarize it. Once it has been removed the electrical impulses will travel smoothly over the surface of the heart again. He will never be able to compete competitively again – but we’ve known that since May.
Facebook Post, Thursday, March 27th
The plan today…a quiet day of waiting. Sam’s anti-arrhythmic medication was discontinued yesterday so he will have more PVCs, giving the doctor more reassurance tomorrow that when he finds the area and ablates it, he has found the right place. I wish I could be in there and see it disappear. It will be a time of celebration!
My brother Dan is flying in today – Can’t wait to see him!
Facebook Post, Friday, March 28th
When Sam was in the hospital in May, in the back of my mind, I thought many times how odd it felt to laugh or feel happy in the midst of something so serious – like those moments were an indulgence that shouldn’t be partaken of during a such a serious season.
Since then, I’ve read Ann Voscamp’s “One Thousand Gifts” and it’s made me think more deliberately about things that have brought great joy – even in the midst of sadness, turmoil, and fear. I have approached these thoughts intentionally this time, bringing a notebook with me and writing many of them down. I want to share some with you as I remember they are “Gifts He bestows. This writing is down – it is sort of like… unwrapping love.”
Thank you for being the hands and feet of Christ during this difficult time for our family, and wrapping us in love, and helping us see joy in the “little stuff,” which ultimately brings joy to the “big stuff” – this crazy journey Sam and our family is on right now. Here are a few things from my list:
-blankets from the hospital warmer
-chocolate chip cookies
-family being constantly covered in prayer
-unexpected visits, texts and calls
-a favorite notebook and pen to write with
-good hugs from good friends and family
-good hugs from strangers
-listening to stories of how Sam’s heroes helped save his life
-having an hour’s worth of sleep that rejuvenates like a full night’s rest
-unexpected monetary blessings
-a doctor who answers my text messages
-a long run of no PVCs on the heart monitor
-seeing Sam sleep peacefully and pain free
-finding that “comfortable spot” going to sleep on the waiting room chair
-seeing someone’s initials I know on Sam’s IVs
-someone who offers to hold my hand and pray
-quiet IV pumps
I have been reminded over and over again that all good things come from Him – and we have much to be thankful for. From One Thousand Gifts – Eucharisteo – By giving thanks, we find joy.
Thanks for being here with us. I love and appreciate all of you. I’ll keep FB updated tomorrow as Sam’s procedure progresses.
Your prayers for Sam to be calm and relaxed are working. He slept well last night. Talking and laughing with Olivia now. Wrapped in a prayer shawl Pastor Chip sent to him.
The waiting begins. Keep checking this post – I will add updates.
0953– they just took him back. He was calm, cool and collected, pulse was about 64. CRNA gave him 1mg of versed and we immediately got the silliest smile. Olivia asked if he was feeling loopy already and he shook his head yes.
1025 – Dr. Tandri came by Sam’s CCU room where we are waiting – reminded me again that he will do “whatever it takes” – and thought that they might be done in 5 or 6 hours.
1229 – Text from Dr. Tandri – “Everything is fine. We are mapping.”
1314 – Call from Dr. Tandri. They have identified the area that caused the arrhythmia last week – it is one area, but has two different exit points. They are about to start cauterizing and then will continue with mapping study. they want this area to rest a while, then after mapping, go back to cauterized area and make sure arrhythmia is gone. Guessed that they would be finished about 4pm.
1547 – Call from Dr. Tandri. They are finished with the ablation. It will still be a few more hours before he is finished. They are going to wait and retest the area. Before the ablation they were very reliably able to reproduce the arrhythmia. After the ablation, they tested it once and were not able to reproduce it. But again, they are going to wait and retest the area. Sam will remain sedated until the procedure is over. When he said he’d be finished by 4, he must have meant he’d be finished with the ablation by 4….
1655 – Text from Dr. Tandri – “Still finishing up”
1815 – Nurse told us that they were extubating him and waking him up. Haven’t seen him yet, but if he’s like last time, I anticipate to see my grumpy guy very soon! (He was grumpy coming out of anesthesia the last time). Can’t wait to kiss that face! May be a while before I update, but assume all is good!!!!
1850 – I guess I should wait on updates from Dr. Tandri! He just called – said that they have finished looking at “other potential circuits” and are finishing up now. He should be out to talk to us in about 40 minutes.
Uncle Dan here… Amy gave me free and unlimited access to her phone. I’m assuming she wants me to send out an update.
Sam is out of surgery and back in his room with us. I’ll let Amy give more specifics later, but the doctors seem confident that everything was a success. He’s pretty uncomfortable now, but I think we finally got some pain meds in him to help him sleep. The staff here has been great. Our night nurse hasn’t left our room in the last 2 hours.
I’m guessing it will be at least another hour or two before Amy is willing to leave his side to give any updates. The goal tonight is to just keep Sam comfortable. He’ll hopefully rest for the weekend, then the doctor wants him on the treadmill for a stress test on Monday. We’re hoping to be discharged by Wednesday.
Thanks to everyone for the thoughts and prayers. Amy and David are very appreciative of everyone’s help through this.
I’m gonna give Amy here phone back. I think I crossed the line when I replied to some of her text messages for her!
1930 – Sam in recovery – Doctor came out to talk to us. His first words – “I think we did it.” There were 2 foci that made a figure 8 and would “ping” off one another. He ablated a 2-3cm area near the valve. ARVD typically causes damage around the valve, and that is where he found it. He cauterized several ‘potential circuits’. Sam is having no PVCs now, but heart will become irritable in 7-8 hours as his body realizes it has cause to be irritable.
Started that update just before Sam came in about 2015 and I never got a chance to send it until now. He has been in pretty intense pain. Gave him fentanyl and toradol and finally decided to start a morphine PCA pump. He is sleeping now. Keeps asking for water. Has to keep his leg straight b/c of the femoral access so he is having trouble getting comfortable. Throat sore from intubation. Arm sore b/c of the position of the blood pressure cuff all day. He has a drain from the pericardial sac and that seems to cause the most discomfort of all. Hopefully a good night’s rest will make things seem a lot better. Here’s hoping and praying it’s a reasonably quiet night.
Lol. The IV pump started beeping just as I typed that.
Facebook Post, Saturday, March 29th
Rough night for Sam. He was in a lot of pain, finally that was under control, but then he got nauseous. He’s finally resting again now. They are taking good care of him. David and I are both still staying in the room with him overnight.
Today continues to be a rough day for Sam. He’s had big fluctuations in blood pressure and his hemoglobin is low. He’s dodged getting blood three times in the last 11 days, not sure he will dodge it this time. They have been bolusing him with IV fluids. Running 150cc/hr for several hours now. Drew off 240ml of blood from around his heart… Anyway, I know that’s a lot of technical. Just know he still needs your prayers. His pain seems to finally be under control, but he is very nauseous. He hasn’t eaten much in 11 days. Needs his appetite back, too!
Sam’s doing better. He’s on his 4th liter of fluid for the day now. His color is improving, still not eating anything. One of the docs said that he thought tomorrow would be a turning point.
The ablation in October was done on a Thursday, he was discharged from the hospital on Friday, we flew home, arriving at midnight, and then he got up on Saturday morning and took the ACT. We knew this procedure would be harder since he’d been through so much more the days prior to it, but I don’t think we were expecting this much of a difference.
We are hopeful that tomorrow will be that “turning point” we are praying for. More sleeping for Sam. When he stirs at all, we offer him water. I got him to eat three spoonfuls of chicken broth an hour ago. yay! When his appetite does come back, I think it will come back with a vengeance.
The human body is strong; the human body in fragile. My pastor reminded me of that today during a prayer. Sam has taken us on a roller coaster of emotions today, so I have also been reminded that our emotions are just as fragile /strong. Funny how your can be so confident about something one minute and the next be sure everything is falling apart.
As I mentioned earlier, when Sam had ablation done in October, the procedure was very similar, and we flew home the next day. We knew this would be tough, considering all that he’d been through leading up to this go-round, but we didn’t realize that he would still be feeling so poorly 24 hours post-op.
The immediate concern now is nausea. He hasn’t been able to keep ANYTHING down today. We’re assuming that the large amounts of anesthesia used yesterday are the culprit and hoping that it is working itself out of his system. Hopefully we will see a drastic improvement tomorrow.
He looked really bad early this afternoon, but pushing the IV fluids really seemed to help – he’d become very dehydrated.
During a bad round of coughing and nausea a couple of hours ago, Sam inadvertantly pulled out the drainage tube that was in the pericardial area between the pericardial sac and the heart wall. That’s the tube they used to pull 240ml of fluid away from the heart this morning. They are monitoring him closely now (ultrasound, BP and pulse) to make sure that the fluid does not build back up (heart doesn’t pump well with large amounts of fluid pressing on it!). If fluid comes back, they would have to put another drainage tube back in. However, after talking to the doctors, they put our minds at ease and don’t foresee this being a problem. That was one of the several roller coasters of emotion we rode today.. but happy the docs are feeling good about it now.
Prayer list for tonight: Nausea, pressure sore, fluid to not collect around heart, good night’s rest
Facebook Post, Sunday, March 30th
I am hopeful that today will be a better day. Sam has stirred a bit this morning and had a little water already. He says that his nausea is better. They did have to give him a unit of blood – it is running in now. Hopefully that will give him a bit more energy also. They did a couple of ultrasounds on his heart during the night and monitored the BP closely. Everything is okay in that area, too.
Dan here… The doctors just checked up on Sam and seem happy with his progress. I know Amy and David wish it was going faster. He’s now awake and looking better. He doesn’t quite have an appetite yet, but he is able to get up out of bed, although he needs a little coaxing from David. They are adjusting some of his meds (lower doses) so we’re hoping that will help get rid of the nausea so he can get his appetite back.
Happy ending to a long day.
Sam turned the corner mid afternoon. Still has not eaten anything other than crackers, but that is a start! We have tempted him with everything we can think of from smoothies, drinks, broth, soups, etc. All he’s wanted is crackers and water.
His color is back and he’s gotten out of bed a couple of times. We will have to wait and see what the morning brings – not sure yet if they will proceed with the next NIPS study – that is the non-invasive programmed stimulation study that they did pre-ablation. When they did it last Wednesday, they wanted to produce the arrhythmia. Now, of course, post-ablation, the prayer is that it is not produced – further confirmation that the problem area was ablated.
Down side to proceeding with the procedure is that they will need to use anesthesia again. He’s wearing a scopolamine patch (thanks for the suggestion, Debbie H), so maybe that will help some with the nausea post-procedure. He also has ginger candy and ginger tea (thanks, Felicia!) and that has been soothing for the nausea and his throat which is sore from the intubation tubes he’s had to endure so many times the past 12 days.
Arm that had infiltration the first day at Springhill was hurting today. He also has limited range of motion, so PT is going to come and look at it.
They did another ultrasound of his heart this evening and confirmed that there is no accumulation of fluid in the pericardial space.
Things are looking up. Haven’t made flight reservations yet, but still hopeful that Wednesday will be discharge day!
Facebook Post, Monday, March 31st
The original plan was to have the stress test today and NIPS test tomorrow, or vice versa. Sam was off to a slow start this morning – not feeling nauseous, but not having an appetite, either. So, the current plan is to do both tests tomorrow.
Sam finally is getting his appetite back. It is not ravenous, but he is at least showing some interest in food. For the past few days, every time we offered something, the response was, “Maybe later.” This afternoon, Olivia’s mom came in with a protein drink that he’d specifically requested, and he looked visibly excited about the fact that she’d found it. The look on his face was priceless and made this momma very happy!
Dr. Tandri came and talked to us for over an hour again today. He is convinced that he ablated all of the problem area, and even “potential” problem areas that might have been an issue later. The tests tomorrow will confirm the results of the ablation to Dr. Tandri, and more importantly, will be a step in giving Sam some confidence that this is once and for all not going to affect him anymore.
They have started weaning him off the IV amiodarone and changing him to the tablet form of the drug. One more step closer to discharge! Still not positive when that will be – but if all goes well with no complications, hopefully it will be on Wednesday or Thursday. We’ve kind of been assuming Wednesday, but one of the nurses told us tonight that it would not be until Thursday.
Facebook Post, April 1st
It’s time to pray again that little concerns don’t become big ones. April 1st – it’s been officially two weeks since this all started and minor complications can potenially become major problems the longer our stay. Please pray that Sam stays healthy and is ready to go home ASAP.
Latin lesson for the day – nil per os – NPO – nothing by mouth. Sam’s heard that way more times the past two weeks than any person should have to. One more morning of NPO. One step closer to going home.
Two weeks ago today this journey began. Praying Sam gets good news and gains confidence from today’s tests. Hurry up and wait is again the motto for the day. Not sure when things will get started.
Sam just left for tests – they are going to do them back to back. Should have results in about two hours. Tandri will text me updates.
Test went well. No Arrhythmias. Headed to NIPs
“No VT on NIPS”
That simple text. Just.made.us.so.happy!
Thank you, Lord!!!
Just made reservations to fly HHHOOOOOMMMMMEEEEEE!
My brother Dan timed his visit perfectly. He arrived the day before Sam’s long ablation procedure and left a few hours after we heard that Sam’s test results today. Sam has had a great support team up here! Thanks, Dan, Suzanne and Olivia!
“If someone’s going to beat the odds, it may as well be Sam.” More words of wisdom and support we heard from Pastor Chip. Beat the odds is just what Sam did, confirming it decisively with the two tests he had done this morning.
Sam will be discharged from Johns Hopkins tomorrow! We are flying home in the evening and will arrive in Mobile ready to greet five more Cockrells. We are excited, to say the least! I know it sounds so cliche, but I don’t know how we will ever be able to express our thanks. Realizing that so many of you were thinking, praying and providing for us, and knowing that all of my “littles” and a couple of my “bigs” were being so well loved and cared for gave us such a peace… we simply can’t express our thanks.
What a journey of faith this has been. I am in awe of where we were two weeks ago at this very moment, and where God has led us. Dr. Tandri has been involved in Sam’s care since October when Sam had the first ablation procedure done. He won me over right away when he asked for my cell phone number so that HE could call me with updates during that first 9 hour procedure. When we were discharged the next day, he told me to keep his number and call if I ever needed him. I never imagined needing him for something like I did on March 18th. Never. Neither did Dr. Tandri.
Dr. Tandri told us today how anxious he was the first few days for Sam. The doctor over the CCU here at JH called him a “mother hen” and we saw that in Mobile, too. He was very complimentary of all that the medical staff at Springhill did to save Sam’s life. “The right people were at the right place, all doing the right things for Sam to have miraculously survived.” David and I knew they were doing all that they could, but it was good for us to also know that everything was being confirmed by Dr. Tandri.
Sam’s diagnosis has not changed. He has an inherited genetic condition called ARVD. Dr. Tandri has taken a lot of time talking to us this week explaining everything thoroughly and explaining to Sam why this happened and most importantly for Sam, explaining why it won’t happen again. Never before has he had an ARVD patient arrest like Sam, describing what happened on March 18th as “the perfect storm.” I have had to stop asking myself all the “what ifs” that might have prevented what happened two weeks ago and simply be thankful for the “here and now.” Dr. Tandri was as excited as we were this morning when Sam did the stress test. He said that his heart rate went up during the test right along with Sam’s.
Sam will leave tomorrow with an arm stiff and sore from an IV that infiltrated, a throat that is hoarse from intubation, and a chest that is sore from 65 minutes of CPR, but miraculously, a heart that appears to have suffered no long term complications from the second SCA. His heart action has returned to its pre-SCA function!
Sam not training and competing was something I had a hard time wrapping my mind around last year in May because it was such a big part of his life. But a couple of good friends reminded me that the same determined spirit that drove him to do so well in triathlons would simply transfer over to his next passion. That prediction as proven to be very accurate as we’ve seen him dive into attaining new goals within the Civil Air Patrol and academics. His driven personality is what made him succeed in sports and what has driven him forward in his new endeavors since May when his ARVD diagnosis was made.
While both incidents in May of 2013 and in March of 2014 have been both physically and emotionally challenging, I think that overall, perhaps May was more of an emotional challenge and this time around it is more of a physical one. Not to downplay either… just to say that in May, the diagnosis was completely new, and life as Sam knew it completely changed. All of his short term and long term plans changed in May – everything from his summer job as a lifeguard to long term goals of being in the USAF, not to mention the end of his competitive triathlon goals.
This time around, his hospital admission was more traumatic (who’d have thought that could happen?). He was intubated longer, hospital stay was longer, more procedures were done, and it was topped off with the 9-10 hours epicardial ablation procedure. But this time, the diagnosis is the same and he’s not having to change long or short term goals.
Just looking for the silver lining, right?
We are anxious to get back home so that life can get back to normal for Sam.
H-O-M-E – Mobile Regional Airport, April 2nd