FAQ

Happy Heart Month, and specifically, Happy National Wear Red Day.  The American Heart Association has designated February as "Heart Month", but if you live in my house, every month is Heart Month!  In honor of Heart Month, I thought I would do a little "Frequently Asked Questions" blog about Caleb's condition.  Happy reading! 

How is Caleb doing?
Caleb has been doing really well in the last week.  His birthday party was a blast and he has welcomed the second year of his life by having a huge vocabulary explosion.  He now counts to 12 and can sing Itsy Bitsy Spider all by himself.  He had an echo yesterday that showed that his heart function has not worsened and even looks slightly stronger than 2 weeks ago.  He now gets almost his entire daily calorie intake through his IV, and even though he has almost stopped eating entirely, he's gained a little weight and the doctors are pleased with how much energy he has.  Yay for medical technology!

When will Caleb get his new heart?
I wish we knew!  The amount of time people wait varies greatly.  Caleb has now been waiting 3 months and while that feels like an eternity to us sometimes, it is definitely in the realm of normal.  

Where will his new heart come from?
All hearts that are donated come from a person (in Caleb's case, a child) who has been in some kind of accident and is on life support.  When it is determined that the person is brain dead, but the other organs are still functional, this is when the option is presented to parents to donate their child's organs.  The child has to be on life support to be an organ donor; otherwise there is not enough time to procure the organ and transplant it into Caleb's chest.  The heart can come from pretty far away, as long as there is no longer than 4 hours between the time the organ goes from one chest to the next.  When a heart becomes available, it is always offered to patients in that same state first, regardless of how long they have waited.  So if there is a heart in, say, Kansas, and a child that matches that heart has been waiting for 1 day, he would get that heart first.  If no child in that state is waiting for that size of heart, it is then offered to surrounding states and it goes to the child who has been waiting the longest. 

Is Caleb at the top of the waiting list?
There is no single list with kids listed 1 to 100, because there are several factors that go into who gets what heart.  First, there is the status.  Caleb is status 1A, which means he is in the top priority group.  People on status 1A get hearts before any other group because they are the sickest.  The second factor is blood type, which must be compatible.  Caleb has O+ blood which is sometimes difficult to find a match for, because he can only receive a heart that is also O+.  The next factor is size.  Caleb weighs approximately 23 pounds, and his weight range for a donor heart is about 23-45 pounds, roughly.  And finally, each donor heart is checked for certain antigens that have to match Caleb's unique set of antibodies in his own blood.  When you take all these factors into consideration, you get the picture of what kind of heart Caleb can receive.  In the state of Indiana, Caleb is the only child his size waiting for a heart, so if a heart becomes available in our state, it will automatically go to Caleb, as long as it also matches his blood type and antibodies.  We don't know how many other kids in surrounding states are waiting as well, but we know there are now not very many kids in this region who have been waiting as long as Caleb, so hopefully that means a heart will be available soon.

Will Caleb's heart grow with him?
Yes.  It will grow as he grows; however, the average "life span" of a transplanted life is about 10-13 years.  This is due to the fact that most people who have had a heart transplant eventually develop coronary artery disease and get sick again and have to have another transplant.  Some hearts last much longer than that, and some children have to go through it all again only a year later.

Can Caleb receive a girl's heart, or just a boy's?
Gender does not matter and he can receive a heart from a girl.  

Once Caleb gets a new heart, will his health be "fixed"?
When Caleb does receive a new heart, he will feel better than he's ever felt in his life.  He will no longer have a heart defect or heart failure, but will have a fully functioning heart.  However, we are trading in one kind of illness for another because in order to prevent his body from rejecting his new heart, Caleb will be on drugs to suppress his immune system every day for the rest of his life.  Even after 10 years, if Caleb missed his drugs for one day, his body would begin to reject his heart.  (Isn't the human body fascinating?)  Because of his immune system being significantly suppressed, Caleb will have to live by a different set of rules than the rest of us.  Getting sick will be a big deal for him, and we will have to be very careful to avoid people and situations that would expose him to bacteria and viruses that wouldn't be risky for a healthy person, but for him could be very dangerous.  Just to give you a few examples of the things Caleb has to avoid: We can never have a pet.  Caleb can't swim in fresh water.  We will probably never go to a place like Chuck E. Cheese or Big Bounce.  We can't have a real Christmas tree.  We can't peel citrus fruit in front of him and we can't have stuffed animals in our house for the first 6 months post-transplant.  When Caleb goes to school someday, the school nurse will have ongoing communication with the transplant team at Riley and if people are sick at school, Caleb will stay home.  And the list goes on.  So will we have a normal life?  Yes.  And no.  He will be able to run and play and go to P.E. class and do all the activities a healthy kid will.  But he will take tons of meds, and go to the hospital frequently, and have a mom who becomes obsessed with hand sanitizer and avoids crowds during flu season.

What is your biggest need right now?
Our biggest need right now is for people to pray for us and encourage us.  Receiving cards and notes and emails that show us that we are not forgotten make a huge difference in our day.  Financially, we are in a good place and we have been blessed by so many people who have reached out to help.  We just need to have ongoing support because when your life gets disrupted and you live in a hospital, it's easy to feel cut off from the outside world.  And if you're a person who prays, we ask that you continue to pray for us to be strong as a family in every way.

Thank you all for following our story and for being a part of this crazy time in our life.  Fox 59 News is interviewing us this week so stay tuned for Caleb's television debut!