Journal

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.

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Journal entry by Tiffany-Jerad Norman

Jaden's procedure was completed in about 3 hours, and everything went well. They were not able to induce any arrhythmias, so the ablation could not be done. We are thankful that the worse types of SVT have been ruled out, and his heart did not have to be altered to fix it. They believe that he has atrial tachycardia, which is usually benign and not suspected to cause any significant issues. As of now, the plan will be to monitor him without medication and follow up in 3 months. We will have an appointment tomorrow at 9:45 with Jaden's cardiologist to go over all his testing from yesterday and make sure he can continue all activities with no restrictions. We are so grateful for all the texts, calls, messages, and prayers!  God is good!! 

With sincere gratitude,

The Norman's

22 The faithful love of the Lord never ends!

His mercies never cease.

23 Great is his faithfulness;

his mercies begin afresh each morning.

24 I say to myself, “The Lord is my inheritance;

therefore, I will hope in him!”

25 The Lord is good to those who depend on him,

to those who search for him.

Lamentations 3:22-25


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Journal entry by Tiffany-Jerad Norman

After talking to Dr. Cannon yesterday, we had some things to think through.  There is only a 50/50 chance Dr. Cannon will locate something to fix.  Though this was disappointing for us to hear, even if nothing can be ablated, we will at least be able to rule out the more severe kinds of SVT. The risk we take of not doing anything is unnecessary stress on his heart and the possibility of his ICD shocking him.  Dr. Cannon mentioned that Jaden should have a say in whether to do the procedure or not. After some discussion last night, Jaden decided he just wanted to get it done.
At 8:00 am, he was taken back for the procedure.  It will take anywhere from 2 to 8 hours, depending on whether something they find something. Unfortunately, only one of us could be with Jaden here at the hospital due to COVID-19, so Jerad and Treyton are hanging out in the hotel "farming" on the PS4 to help pass the time. We want to say thank you to everyone for the prayers. We can feel them and know that God is aware of every detail of Jaden's procedure. He continues to write Jaden's story, and we are thankful that He is in control.
 
Tiffany

Journal entry by Tiffany-Jerad Norman

Since Jaden's heart surgery in July of 2018, things have been pretty uneventful and full of first opportunities for him. He was a freshman this year and was able to play football for the first time. He enjoyed it and is looking forward to playing again this fall, Lord willing. A few weeks ago, he turned 16 and was able to get his driver's license in the mail, so that has made the feeling of being stuck at home a little bit easier.
As I write this, we are on the road to Mayo Clinic for Jaden's yearly testing and doctor's appointments. This past week, Jaden's doctor that monitors his ICD called to let us know his last ICD transmission showed some abnormally fast heartbeats called Supraventricular Tachycardia (SVT).  The SVT alone is not a huge deal; however, it can turn into a problem if not controlled. SVT can be genetic (in 10% of cases), or it can just develop for other reasons. I have SVT, so he can probably thank me for the excellent genetics ;) The 2 treatment options given to us include the use of medication or a heart cath with the possibility of a cardiac ablation. Both his ICD doctor & cardiologist feel that the cardiac ablation is the best option for him. They will need to do a heart cath first to determine what type of SVT it is and if an ablation is a possibility. If it is a "garden variety," there should be a 95% chance to cure it with an ablation. If Atrial Fibrillation causes the arrhythmia, an ablation will not work, and he will need to take medication instead. Jerad and I still have some questions before we plan to proceed and hope to get them answered tomorrow. Jaden is scheduled for a blood draw & COVID-19 test this afternoon in case we decide to have the procedure. Tomorrow he will have an ICD check, EKG, Echocardiogram, stress test, cardiac MRI, chest x-ray & we will meet with Dr. Cannon to discuss the procedure. If we chose the heart cath & possible cardiac ablation, it would take place on Tuesday morning. He will have to spend the night in the hospital, and we will see his cardiologist on Wednesday before heading home.

Prayer Requests:
  • Peace for Jaden. The only thing he has to compare this to is open-heart surgery. He would prefer never to go back there if he can help it!! Dr. Cannon said this would be a night and day difference, but unfortunately, his mind goes there.
  • That Jerad and I will have clear direction on whether this is the right decision for him. Putting him under anesthesia at a time with so many unknowns is a stressful thought.

We trust in God's plan and know that He goes before us.  We have seen Him work in so many ways already through this.  I am off work right now for 4 weeks, so I have been able to be present for both the boys since they need some structure. The boys and I have started going through the book of James since we are all home together. Jaden has also been doing a bible study in Philippians with his sweet girlfriend, Maggie. These scriptures have that have spoken to us this week. We continue to be amazed at God's leading know that His timing is perfect!!

Whatever happens, my dear brothers and sisters, rejoice in the Lord. I never get tired of telling you these things, and I do it to safeguard your faith.  Philippians 3:1

Dear brothers and sisters, when troubles of any kind come your way, consider it an opportunity for great joy, for you know that when your faith is tested, your endurance has a chance to grow.  So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.  James 1:2-4

 

Happy Mother's Day!! I pray that you will be able to spend uninterrupted time with your kids lately, as I have had the chance to do. It does a heart good!! I feel incredibly grateful today to be a mom of 2 boys that God has entrusted to me.

Love,

Tiffany

 

 


Journal entry by Tiffany-Jerad Norman

Today Jaden is 12 days post op and is slowly continuing to gain strength.  He still tires very easily and he is not gaining energy as fast as he would like, however, this is all completely normal. When he was released from the hospital he had some fluid on his left lung and his heart rate was running pretty high.  Since we have been home Jaden has seen his family doctor and had a chest x ray.  We are praising God that the fluid is gone and his heart rate is down to normal with the use of his beta blocker. Jaden's incision is looking pretty good and is healing nicely without any infection.  He is pretty much down to taking Tylenol or Ibuprofen twice a day.  For the most part he is doing really well.  Prayer is powerful!! The beginning of last week was rough but ended on a good note.  One of Jaden's hobbies is showing cows for 4h at the Poweshiek county fair.  Unfortunately he was not allowed to show but the fair made an exception and let Jaden's cousin, Kodie, show for him.  Jaden was up quite a bit last Saturday night with pain however he was insistent on going to the fair to watch his cow be shown and support his cousin, brother, and friends.  I was too tired to argue so I gave in and we went.  I am glad I did because Jaden and Treyton's 2nd year bottle calves each got Grand Champion!! Thank you to so many people that offered to help with our animals while we were gone and a special thank you to Stacey James for all help in getting things figured out so Kodie could show in Jaden's place.  We also could not have done any of this without papa Myron!! Through this circumstance I have learned the importance of helping others when they are faced with a tough situation.  So many people have helped us out with care packages for Jaden, financial support, a listening ear when things were rough, and most importantly prayer.  Right now Jaden and I and are getting the opportunity to walk along side a mom and her son while they will be faced with the exact same surgery that Jaden had.  I met Marcia on a facebook page for Mayo clinic HCM patients a few days after Jaden had surgery. I was obviously drawn to her because Jack and Jaden are the same age, going through the exact same surgery at Mayo, with the exact same surgeon.  I know how she feels, the fears she has, the emotions she is going through because I was her just a few weeks ago. It is nice to be on the other side and be a support for someone else. Jack is nervous for his surgery so Jaden has been able to text with him and share how things went for him. I think he has found a life long friend! Sometimes when things get tough we tend to only look at our needs and this time God is showing me that we need to look outside ourselves and poor into others. It is amazing how God works things out for us and shows himself in even the little details. We are bringing Jaden up to Mayo on Monday for his 2 week check and have found out that is Jack's surgery day!!  We are excited that we will hopefully get to meet them and spend a little time with them :) Jaden and I spent tonight putting together some care packages for Marcia and Jack because we know how grateful we were to be on the receiving end and want to give back in return. Please pray for Jack and Marcia and the rest of the family on Monday as they enter the unknown of open heart surgery.  Please pray that they feel God's peace and comfort as real as Jerad and I did that week.  Please pray that we can be a blessing to Marcia and Jack as so many of you have been for us!!  God is GOOD!!

Love,
Tiffany

Journal entry by Tiffany-Jerad Norman

We made it home last night around 8:45 and it was so good to be home.  Jaden had a very comfortable ride home and had a good night last night.  Apparently being home is what he needed to get better. It really is true that there is no place like home 🙌  He still gets pretty tired but is smiling, laughing and being himself again! He has had quite a bit of company today and is wiped out but it's a good wiped out 😀.  Jaden will be pretty tired for 2 weeks and should slowly gain energy over the next 6 weeks.  He does have a little fluid on his left lung but they are not too concerned about it and expect it to take care of itself in the next week with the help of some Lasix.  We will get a repeat chest x-ray at his follow up appt with his PCP or cardiologist. We have made it all day on 1 pain pill along with Tylenol and Ibuprofen.  Jaden is pretty sure there is no way he is going to miss the beef show at the Poweshiek county fair so we plan on bringing him until he tires out (with permission from the cardiologist).  We can't thank everyone enough for the prayers and support over the last week.  Things could not have went any better and we give God the glory for that.  I will end this post with the scripture that God gave to Jaden before he went into surgery ……. Jeremiah 29:11-12 "For I know the plans I have for you, says the Lord. "They are plans for good and not disaster, to give you a future and a hope.  In those days when you pray, I will listen"

Journal entry by Tiffany-Jerad Norman

Jaden has had a pretty good day for the most part.  They have a good pain medicine routine going and we have seen some smiles which has been the best part of the day.  He has taken a shower which felt amazing to him and went for several walks. They are talking about home tomorrow but Jaden is not looking forward to the car ride so we are not 100% sure of the plan yet.  We may drive part of the way and stop if needed for another night to make sure things are going fine.  Below are the AMAZING people that have taken part in helping Jaden have the best quality of life possible despite having a heart that works a little different than most.  The first picture is Dr. Michael Ackerman (Jaden's cardiologist) that recommended Jaden have the Septal Myectomy along with the ICD placement in order for Jaden to live life to the fullest.  He came and visited Jaden in the hospital everyday despite not being the cardiologist on call.  On Tuesday he came twice and yesterday he brought him some chocolate milk and signed his pillow.  The message he placed is pictured below in the next picture. It says "Keep up the great work and He will do the rest" Of course it brought this mama to tears!! It is amazing how God can show up in people through caregivers.  He is truly a brilliant doctor but an even more genuine, caring person.  Every time he left Jaden he stood there with his hand on his head for awhile and always gave words of encouragement. I know I have said this over and over but there is no other place I would be for care than here.  The doctors and staff are not here for a paycheck but to make a difference in people's lives, and that is exactly what they do.  The last 2 pictures are of Jaden and Dr. Dearani his cardiovascular surgeon that did his surgery and the rest of his team.  Since diagnosis to now, I have studied this disease and knew that this was the facility and surgeon that I wanted if Jaden ever needed surgical intervention. We are praising God that he was here and under the care of these knowledgeable doctors. They have dedicated their lives to understanding this disease and how to improve the quality of so many and we will forever be grateful.  Tonight I am thankful for a group of wonderful people that have mended my son's heart!! 

We ask for continued prayers for controlled pain and safe travel tomorrow.  Jaden (ok and me too) are also a little nervous about the ride home tomorrow so please pray for continued peace.  Jaden continues to have an elevated heart rate but they are not concerned and think that getting home will help.  There is no place like home!!

Love,

Tiffany

PS......Jaden is eating peanut m & m's tonight for supper and we don't care.  We also know who he is related to 😉

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

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

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

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!!
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.

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