Journal

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

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

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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