2HeartsAreBetterThan1

            “Who is with Khadees?” seems to be the question of the last couple of months.  Unfortunately, for safety reasons, Khadees cannot be left alone.  While we continue to hope and pray for the best, someone needs to be with him in case his life vest alarms from a lethal heart rhythm.  If Khadees is unconscious and unable to respond to the life vest, it will deliver a shock to hopefully fix the arrhythmia.  If he is unconscious, the next step is to have whoever is with him call 911.  Thankfully, this is something we have not experienced.           With all going on, I still have to work full-time and we have decided to keep the kids in all of their activities to try to keep their lives as normal as possible.  (Khadees will need me most post-transplant and I want to make sure I can be there as much as possible when we get to that point.)  As a family of 5, our schedule has always bee...

       August 23, 2022- to most people that date probably has little importance.  It’s a Tuesday, another day of work, another day of school, another day of everyday normalcy.  But for us, it’s one month and one day that Khadees has been on the transplant list.  Each day is another day that edges closer to what we hope will be THE day.  With each day, we know exactly how many days have passed (61 days since diagnosis, 32 days since listed on the transplant list) and get even more anxious… the more time that passes, the closer he might be on the list, right?  According to UNOS, the wait time for a heart can easily be 6-12 months, or even longer for someone on the list at a Status 4. You never know how many people are on the list, where you're on the list, etc.  Even if he was next today, tomorrow there could be another person listed at Status 3 and two listed at Status 2.        There are 6 different statuses on t...

  So many times I’ve heard people say that your life can change in a moment, or everything can change overnight.  While it’s easy to acknowledge the truth in this, you never truly realize the reality until you experience it.  June 23, we were told Khadees’s heart was failing.  Over the next month, he underwent many tests to discover that he had a genetic condition, Left Ventricular Noncompaction Cardiomyopathy, caused by the TTN gene mutation.   Genetic counseling was able to tell us that the mutation might not show until the age of 10, so while the kids will undergo genetic testing, we won’t really know anything until they are older.  For now, we know their hearts are healthy.  On July 22, he was placed on the heart transplant list as a Status 4.  We are thankful to have such a wonderful transplant team, but there are many things about being on the transplant list that no one can prepare you for.  While listed, you are told to answer every s...