Journal

Journal entry by Tiffany-Jerad Norman

We received the call this week from Mayo Clinic letting us know that Jaden will be having surgery to remove the thickening and to relieve the pressure from his heart and increase the blood flow.  They will also be placing and ICD (implantable cardioverter defibrillator).  The ICD is a preventative measure to detect if Jaden develops an abnormal heart rhythm and will deliver an electric shock to restore it back to a normal heartbeat.  His pre-op physical will be in Minnesota on Friday July 13 and his surgery is scheduled for Monday July 16.  It will be an open heart surgery that will take 3-6 hours.  We are thankful that they are getting him in soon because Dr. Ackerman said it will be about a 2 month recovery.  He should have a good month to heal before heading back to school.  There are a lot of other things that Jaden would rather do with his summer but they say that his quality of life should improve quite a bit once he is fully recovered. As I look at the picture that I placed of him on this page in his baseball uniform, I am reminded of how good God is.  Jaden has always been told that he could never play sports and now he is able to play baseball.  In the big picture we know that sports are only a small part of life but to a 14 year old it is important. This is something he can add to his answered prayer list.  We are grateful for God's constant presence and comfort through this situation. Please pray for us as we continue to process what things will look like and pray for Jaden as he is pretty nervous about everything.  Thank you to so many of you that have walked with us through this journey and continue to support us!!
Show your love and support for Jaden.
Make a donation to CaringBridge to keep Jaden’s site up and running.

Journal entry by Tiffany-Jerad Norman

Our family had a great weekend celebrating Myron & Cindy's (my in-laws) 45th wedding Anniversary at Camp Quaker Heights in Eldora.  There is something about that place that is so special and peaceful.  The weather was perfect and it was a time for  just relaxing and spending time with family.  Jerad and I were able to get away for a few walks while we were there and God's presence was so real. We both have so many fond memories of that place including, family camp, young adults retreats, and family gatherings.  To be honest I didn't really want to leave there and face the reality of this week and preparing for Jaden's upcoming surgery.  Sometimes the unknown is difficult because we are not in control.  The path we walked this weekend was long, uphill, and exhausting but every time we became tired we ran into something beautiful.  It reminded me that in the trials God always shows up and never leaves us.  He knows the big picture and we are called to trust and have faith in our tour guide.  I have included some pictures we took along the way that were breathtaking and reminders that God walks with us through the uphill battle of the unknown and also reveals to us His beauty along the way.  We ask for your continued prayers as we prepare for the unknown in the upcoming days!!


Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.  James 1:2-4

Journal entry by Tiffany-Jerad Norman

Yesterday we had all of Jaden's pre-op testing done in Minnesota.  Things went well an we are continued to be amazed at Mayo's care and staff.  Jerad and I were talking about what the interview process might look like to become an employee.at Mayo. From the parking ramp employees to the physicians everyone is so nice and accommodating.  We determined that it has to be pretty involved.  We showed up unannounced to Jaden's pediatric cardiologist's office to ask a couple of questions about the ICD they will be placing in him.  They found us the doctor that implants them during surgery and fit us in his schedule.  He took the time to answer every question we had.  They were not annoyed but happy that we wanted to become more educated about our son's health.   It helped make a stressful situation a little bit easier and it just reminded us why we are taking him there for care!!  They have also been very good about involving Jaden in all the decision and making sure he is aware of everything that will happen.  They do not want him to have any surprises and it has helped Jaden a lot in dealing with what things will look like.  Today Jaden is just ready to get things over and be able to be more active without becoming short of breath.  There is a good chance he will feel much better right after surgery because he has pretty significant obstruction to the blood flow to his heart.  If he doesn't feel relief immediately he should within a month or 2 after surgery.  Unfortunately our surgeon shared some news about HCM and children that we did not want to hear.  With HCM I can manifest itself in 2 ways.  #1 by obstruction (just like in Jaden's case). #2 in the heart becoming stiff which will could possible require a heart transplant someday.  Jaden fortunately has the first one however when it presents itself in children as young as Jaden's did, he can also develop the heart stiffness later on as well. There is no way to know if and when this will happen. We will continue to take one day at a time.  With that being said Jerad and I had a great time with Jaden yesterday....lots of laughs and just having fun.  Were not anxious and were prepared to ask what things will look like right after surgery.  We were told it will not be easy to see him right after but are glad that we are fully prepared for that. We know it is because of the prayers that are being prayed on our behalf by so many of you!! We found out that the total time Jaden will be away for us during the surgery process will be 6 hours.  He will be in the ICU for 1-2 days and the PCU (Progressive Care Unit) after that.  When we go from ICU to PCU we are headed in the right direction for healing.  We found out that if all goes well there will be a possibility of being discharged to go home Friday.  It sounds like Jaden will be exhausted for around 2 weeks due to anemia.  All heart patients after open heart surgery are anemic due to blood loss.  They are very slow to give a blood transfusion in less it is absolutely necessary. We know it will be a LONG day but are so grateful that we have several family members that are going to make the trip with us for support!! We are beyond blessed with both of our families!! We ask for continued prayers for Jaden and our family as we head into surgery sometime this Monday. There is power in prayer and we have felt that this week!!

Journal entry by Tiffany-Jerad Norman

We are in the car headed to Mayo for surgery tomorrow.  We just found out our report time is 9:30am which is 3 hours earlier than we thought it was going to be and are thankful that we will have less time to sit around.  We are beyond humbled at the people that showed up to pray with us and Jaden before we took off.  I'm not sure we have ever been in this stressful of situation feeling this peaceful and know is because of prayer.  We live in an amazing community that have made us feel that we are not alone and we have a heavenly father that wraps his arms around us through people when we need it. Please continue to pray as we prepare for tomorrow.....We love you all!!

Journal entry by Tiffany-Jerad Norman



Just wanted to give everyone a quick update. Jaden is officially back in the OR.  We have had a few delays this morning after being told surgery was at 9:30.  The surgery is supposed to last around 6 hours start to finish.  We have all had an overwhelming peace this whole day leading up to the surgery.  Thanks for everyone's continued thoughts and prayers!  

Comments Hide comments

Journal entry by Tiffany-Jerad Norman

We just heard from the surgeon that the surgery went well!! Praise the Lord!!  They still have to make sure that he wakes up neurologically and that there are no bleeds but everything thing went as good as was expected. We will hopefully be able to see him in about 2 hours after recovery and then he will be moved to the ICU.   Thanks again for all the prayers.  We are exhausted but praising God that all went well!!

Journal entry by Tiffany-Jerad Norman

I'm not sure that anything can prepare you to see your child after open heart surgery. Jaden was on a ventilator, has 4 IV's (one in his neck, 2 in his right arm and one in his left), and chest tubes.  We are praising God that he is now off of the ventilator and breathing on his own.  He is able to have conversations with us but has been fighting nausea, vomiting and pain.  We are thankful that things are heading in the right direction but ask for continued prayers for nausea and pain control.  Our hope is to be out of ICU tomorrow(or rather today since it is 2:09am).  There is also a possibility to get the IV in his neck out if everything continues to go the right way.  Jaden heart rate is running high so please pray that it starts to come down.  This is not a huge concern because it is normal after surgery but they would like to see it a little lower.  Again we are so thankful for the prayers as we continue to feel them.  Please also pray for Treyton as he had a difficult time seeing his big brother like this.  We serve a mighty God and are excited to see Jaden's progress over the next few days!

Journal entry by Tiffany-Jerad Norman

I never thought watching my 14 year old resting comfortably would bring me so much comfort and peace.  Today has been pretty rough but things have started heading in the right direction.  Jaden rested pretty well last night however this morning he became very nauseous and started vomiting.  That took place for a lot of the morning so they discontinued his pain medication and switched him to something else.  Unfortunately that created another issue of pain that they could not get under control.  After what felt like years (ok maybe only a few hours) they decided to add other pain meds to the changed pain meds which started the nausea again.  Obviously nausea and vomiting is not what you want to sign up for after open heart surgery.  Jaden has been amazing and Treyton thinks he has the toughest big brother ever.  Since he has been moved out of the ICU he has stayed pretty good for the most part.  They seem to have his pain under control and though he still has episodes of feeling sick they seem to pass pretty quickly!!  In the picture below, he has a heart pillow on his lap. It has become his best friend when he has to cough and move around.  He holds it tight against his chest and it makes things feel more stable.  It came with a marker and there has been several family members here sign it.  As I look back over the last few weeks it is amazing how God worked so many things out for Shannon, Miranda, mom and the kids to be here during his surgery.  Obviously they are very familiar to the hospital setting and there is such comfort in being with people, especially family who understand the stress of medical conditions and all it involves.  We were so glad to have my mom be able to drive up with us and ride home with Shannon and Miranda since my dad is in Alaska.  Myron and Cindy brought Treyton up with them and Myron and Treyton will head back sometime soon to start getting things ready for the fair. Please pray for Treyton as he is going to have a difficult time leaving his brother.  Cindy is staying to help with Jaden so we can catch a nap here and there. Carrie, Brian, and the kids were also able to make the trip and they were able to see him this afternoon at his best so far.  He has taken his first walk (in the picture below) and he has to do one more before the end of the day.  Needless to say he was exhausted and has pretty much been resting for the last few hours.  In the last picture below there is a water fountain.  It is where I sit now as I type.  The weather here in Minnesota is PERFECT...no humidity, and not a cloud in the sky.  At night the fountain lights up and is even more beautiful in the darkness.  This place reminds me that even on the darkest of days God still lights the way and is when we are thirsty he will satisfy us with his living water.

John 7:37-38  ….."Anyone who is thirsty may come to me!  Anyone who believes in me may come and drink!  For the Scriptures declare, Rivers of living water will flow from his heart." 

Journal entry by Tiffany-Jerad Norman

Jaden had a pretty good night last night with controlled pain and some pretty good sleep.  Unfortunately the nausea and vomiting started again early this morning and he is still dealing with some pain in his stomach that won't seem to go away.  They finally took the second chest tube out early this afternoon so we are thankful for that.  The doctors are still glad with the things are going and they don't seem to have any concerns with his heart.  Our next thing to get past is making sure that he does not develop pneumonia.  So far he is doing good and has remained fever free.  Specifics you can pray for are:

1.  That Jaden would eat.  He has absolutely no desire to eat and he needs to in order to gain strength. Everything seems to taste like medicine and he won't even eat cookies 😉 
2.  That his stomach pain would subside.  
3. That the nausea and vomiting would be done
4. That we can see a little smile from him sometime soon.  Jaden is usually a happy easing going kiddo.  It is hard to see him so miserable.

Thank you to so many of you for the calls, texts, and messages.  I apologize if it takes me awhile to respond.  Knowing Jaden has so many people thinking about him and praying for him makes this just a little easier.  I can't wait until he feels good enough to listen to them!!  Hopefully soon 🙏 

Tiffany

Journal entry by Tiffany-Jerad Norman

On Wednesday, we saw Dr. Ackerman, Jaden's pediatric cardiologist, to review his yearly testing.  He always asks a lot of questions, writes things down, and then dictates right in front of us so we can hear what goes in Jaden's electronic medical record.  That process is how we found out Jaden needed open-heart surgery, and this time, we found out that Jaden's heart has completely healed from surgery and everything, aside from occasional SVT, is functioning NORMAL. I don't believe that we have ever heard that so it was exciting to hear. He can continue everything with NO RESTRICTIONS!!  Dr. Ackerman wants to follow up again in 1 year, and if all looks good, he will only need to see Jaden every other year! Whoo Hoo!!

Below is an article showing Dr. Ackerman's character and why we choose him for care.  Not only is he a fantastic doctor, but he is a compassionate, authentic person that wants his patients to have the best quality of life and give them hope!!  There is no doubt, Jaden is living life feeling the best he ever has thanks to many prayers and some phenomenal doctors.

May 9, 2009
A Prom Promise Kept
By Traci Klein

Dr. Michael Ackerman and Stefani

As an 8-year-old girl from Michigan was headed into surgery for a heart transplant, she asked Mike Ackerman -- a pediatric cardiology fellow at Mayo who was part of her care team -- if she was going to live. Dr. Ackerman said, "Of course you're going to live, and I'm going to dance with you at your prom."  Ten years later -- on April 25, 2009 -- Dr. Ackerman flew to Michigan to surprise Stefani Pentiuk at her senior prom to fulfill a promise made years ago.

I've known Dr. Ackerman for about three years, working with him on news releases for his research published in scientific journals and on patient stories with the media. What has struck me about Dr. Ackerman is how beautifully he connects with his patients and their family members. His interest in helping them and getting to know them is incredibly genuine -- and his memory of his patients, their specific circumstances, and personal stories is amazing. So when he told me about Stefani and that he was traveling to Michigan to surprise her at her prom, I was not surprised.

On the Monday after prom, I talked to Stefani by phone. She told me that when she turned around and saw Dr. Ackerman at her prom, she immediately recognized him. "I would know him anywhere," she said. And then she cried -- which Stefani doesn't do often. "I was so filled with emotion."  After sharing a hug, Stefani's principal announced that a song would be played for Stefani and her friend. Rascal Flatts' "Bless the Broken Road" began playing.  Not long after the dance, Stefani's dad, Perry, drove Mike five hours to Detroit to catch a plane to Florida, where he was speaking the next day. The group he was speaking to even rescheduled the time of Dr. Ackerman's talk, enabling him to be at the prom the night before. Everyone but Stefani seemed to be in on this surprise -- and helping to make it work.  But there's more. Even before Dr. Ackerman entered little Stefani's life, Mayo cardiologist Martha Grogan did. She has vacationed in Stefani's town since she was a young girl herself. In 1999, friends told Dr. Grogan about this young girl who was diagnosed with dilated cardiomyopathy and may need a heart transplant. The friend encouraged her to call the Pentiuks. So on a day when Stefani's mom, Heidi, was very worried about Stefani's health, the phone rang, Dr. Grogan, on the other line offering her help as a cardiologist. Eventually, she helped the Pentiuks, including older sister Anna, bring Stefani to Mayo. "I don't feel like I was doing anything special," Dr. Grogan said. "I just wanted to see if I could help."  Both Dr. Ackerman and Dr. Grogan say they didn't do anything special. Many beg to disagree. But part of the reason they say that, I think, is because of who they are personally but also because many people at Mayo -- whether physicians, nurses or staff members at the front desk -- go above and beyond. It's part of the culture. This prom promise story is obviously a one-in-a-million story, but it's also a reflection of what we are empowered to do here in our daily work at Mayo -- to make a difference in a person's life.  And it's a keen reminder to all of us that there is power in words when a person is ill and needs to hear a caring, genuine and hopeful message.

Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Jaden’s Story

Site created on June 28, 2018

Jaden was diagnosed at age 4 with Hypertrophic Cardiomyopathy during a routine preschool check-up.  Hypertrophic Cardiomyopathy (HCM) is a thickening in the heart muscle (usually located in the left ventricle) which affects the blood flow to the heart.  It is usually considered genetic, however, we have not confirmed it anywhere in our family yet.  Jaden was initially diagnosed by Dr. Chandramouli at Pediatric Cardiology in Des Moines .  In 2008 we decided to get a second opinion at the University of Iowa where the same diagnosis was confirmed . In 2013, we decided to bring Jaden to Mayo Clinic in Rochester because they are considered a center of Excellence for this disease and have an actual HCM clinic.  From 2014 until now he has been followed by Dr. Erik Edens at the U of Iowa.  We recently we received a letter informing us that he would be leaving the U of I so we decided to bring Jaden back to Mayo for his yearly check up and see Dr. Michael Ackerman. He is a doctor that has spent a lot of time studying HCM and the genetics involved with the disease.  He has also spent a lot of time assessing the risk of sudden cardiac death in children. We were seen by him on May 30th to find out that Jaden's disease has progressed enough to need surgical intervention.

SVG_Icons_Back_To_Top
Top