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!!
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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!  

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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

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
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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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