I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Saturday, February 11, 2012

CHD Awareness Week--Faces of CHD: Madi's Journey

I'm so late posting this today! Alexis had her 6th birthday party at Chuck E Cheese so it's been a LONG day & I've got a terrible migraine. So today's story is being taken from her mommy's blog, this little girl's name is Madi, she is a transplant recipient ♥

Madison was born on April 2nd, 2006 after a completely normal and healthy pregnancy.  She was pretty and pink, and wide awake.  All of her Apgar scores were great.  She had no breathing issues, and though she was little, she was absolutely perfect.
Fast forward to October 5th, 2008.  Madi, then two and a half, was acting funny after her nap.  She was whiny and clingy and didn't seem to be "with it."  Then my husband noticed that she was not focusing her eyes in any one place, and we got worried.  Panic struck when we realized that she could not stand up.  We quickly called 911, and an ambulance took us to our local hospital.  Once there it was determined that she would be better served at a children's facility, so they took us to Children's Hospital in Minneapolis to try to figure out what was going on.  After some tests and scans, the neurologist came in and told us some extremely shocking news:  Madison had suffered a series of strokes.  To say that I was stunned would be an understatement.  The plan from there was to admit Madi and try to get to the bottom of why this was happening, and hopefully prevent it from occurring again.  In the following hours, it seemed that time went by in a blur.  Madi had an MRI to confirm that yes, it was strokes she was having.  Then she had EEGs and xrays done.  I never in a million years expected what would come next.  A cardiologist came into Madi's room and sat down.  He informed us that Madi had a disease called Dilated Cardiomyopathy. (What's that? )  Her heart was extremely enlarged and was not functioning properly.

This bad heart function caused her blood to thicken and clot, causing the stroke.  We were told that the strokes probably saved Madi's life, as we were previously not aware that she had a problem at all.  Right then and there, our lives totally changed.  Now we had a child with an extremely sick heart.  She was pumped full of IV medications and had numerous specialists added to her team.  Our cardiologist explained to us that it was his hope that we could maintain Madi's fragile heart function, and perhaps better it, with a medication regiment coupled with frequent monitoring.  After about a week in the hospital Madi was released.  We came home with two grocery bags full of medications for our tiny little girl, and learned to administer blood thinner shots in her legs twice a day.  And life went on.  She had a few setbacks here and there, and had to be re-admitted to the hospital in February of 2009.  I was 9 months pregnant with our daughter Sydney, and Madi's heart function was so bad that her heart was barely pumping.  Again the doctors pumped lots of heart meds into her IV and within 5 days, her function was good enough that we got to go home.

Sydney was born on March 24th, 2009, and had an echo right away.  It showed a normal, healthy heart.  We breathed a sigh of relief.  The genetic testing that had been done on Madi showed no known genetic components or underlying disease, but since so little is known about cardiomyopathy's origins, it was decided that we would monitor Sydney with yearly echos.
In July of 2009, Madi's heart function still was not much better, and her cardiologist recommended getting a transplant workup at the Mayo Clinic "just in case."  After that was done, we had a major setback.  While Noel and I were at the movies one evening, my dad and stepmom had to call the ambulance for Madi, thinking that she had had another stroke.  It turns out that some of her medication had reached a toxic level in her blood, causing her heart rate to plummet into the 30s.  She was implanted with a pacemaker after her heart showed some rhythm issues, and we thought we were on the road to recovery.  Again.  This was also not to be.  Every time the doctors tried to extubate her, Madi's vital signs would plummet.  It was decided that the docs at Children's would send her to Mayo in a LifeLink ambulance in the afternoon of August 5th, 2009.  I was so lost.

When we got to Mayo, we were told that the plan was to gradually wean down all of Madi's IV heart meds and get her off the ventilator and sent home to wait for a heart.  In the meantime, since she was so sick, they would be listing her as status 1A on the transplant list.  The morning of August 7th, 2009, after 18 hours on the list, a heart became available for Madi.  (We would later learn that there were two hearts offered that day-nothing short of a miracle!)
Madi was in surgery all day long.  When we finally got to see her, she didn't look that great.. her color was awful and she was totally lifeless on her bed.  About 6 hours after her new heart was in, the bottom fell out yet again.

Madi was rushed to the OR to be put on ECMO (basically bedside bypass) in hopes of saving her life-her new heart was failing.  Thankfully, the new heart just needed a few days' time to recover, and with the help of the ECMO machine, it did just that.
We spent a total of 62 days in the hospital, and another two months at the Ronald McDonald House beyond that.  There were days when we would have six appointments.. there was always something.
Now we are two years post-transplant.  Madi is doing spectacularly.  Though she will be on meds the rest of her life, not much keeps this girl down.  Transplant is not a fix.  It's like trading one set of problems for another.  She has extreme risk of cancer, needing a kidney transplant, and maybe a new heart someday.  There are many things she cannot do because her immune system is suppressed to prevent rejection.

But she's here.  That's what matters.

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