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 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!!
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