This Central Minnesota Family is ‘Praying For A Miracle’

Henry needs a miracle. His heart is tired.

I've struggled to write this story over the past 24 hours, with so many things happening seemingly one right after the other.

HOPE FOR HENRY CHARLES

I'm writing this to you now, with the updated information that I have at this time, and by the time you read this, more may have happened. I will do my best to provide you with updates as early as I can.  If you don't know what's happening, there is a little boy from central Minnesota who has been fighting for his life over the past 24 hours...Actually, for much, much longer than that.

THE PAST 24 - 48 HOURS

However, the past 24 hours have become a crucial step in Henry's heart journey, as he has been waiting for a heart for quite some time. As his current heart started to fail, the family and their team of doctors needed to make the decision; while we wait for Henry's miracle heart, he needs a mechanical heart until a new heart can be found. Henry cannot wait any longer. Period.

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When I briefly chatted with his mother last night...I could hear the worry. I could sense the overexhaustion of spending every second, every minute, every hour of your life as a mother, doing your best to be a wife and mother to all your other kids, and still having to generate all the strength in the world to hold up your son that is fighting for every second of his life. I so wanted to reach through the message and hug her.

What I hear overwhelmingly from the people who know him, and from friends of mine like Michael Shynes, who has even written a song for Henry (See post below), is the same thing. Henry...is...strong. His will is amazing. His spirit is mighty.

AN EMERGENCY SURGERY TO SAVE HENRY'S LIFE

The last I heard, Henry was getting ready to undergo a major surgery that no parent ever wants to have their child go through.

Doctors were preparing to place a mechanical heart in Henry during major open-heart surgery, a procedure his family hopes will keep him alive long enough to receive the lifesaving transplant he so desperately needs.

Henry and his loved ones were all hoping that Henry's new heart would arrive before this had to happen. Right now, this next step is necessary for Henry's survival.

MECHANICAL DEVICE TO KEEP HENRY IN THE FIGHT

Henry has been diagnosed with stage 4 Cardiac Allograft Vasculopathy, or CAV, a severe and irreversible form of coronary artery disease that can affect a transplanted heart.

His coronary arteries have become dangerously narrowed, and doctors recently discovered that his right coronary artery was completely blocked. They also found that his left coronary arteries are almost completely blocked. His heart is struggling on both sides, and his family is praying that the next step will give him enough time to reach his second heart transplant.

Unfortunately, Henry is not a candidate for the Berlin Heart, which is a smaller mechanical device that can allow patients more mobility while they wait for a transplant. Because Henry's heart is sick on both sides, doctors have determined that he needs central ECMO instead.

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WHAT IS AN ECMO?

If you don't know what ECMO is, Henry's mom explained it in the simplest way possible. It is life support. ECMO will do the work of Henry's heart and lungs while he waits for the new heart that could save his life. His family knows this isn't ideal, but they also know it is necessary to keep him alive while he waits for his lifesaving organ.

They are praying that ECMO will be the bridge that carries Henry to his hopefully sooner rather than later heart transplant, and sustains him until his miracle heart becomes available.

Henry's medical team has been preparing him for this possibility.

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My understanding is that the day was spent removing as much excess fluid from Henry as possible and completing several tests to prepare for the procedure. More than 300 milliliters of fluid was drained from his chest tubes, and his mom said that part went well. At the time I read the last message, Henry was comfortable and sedated, and was going to remain that way until surgery.

SOMETHING TO LOOK FORWARD TO

As frightening as all of this is, there was one little part of his mom's update that made me smile.

She says that once Henry recovers, she has been told he should be able to move around while he is on ECMO. He will have quite a bit of machinery with him and will need someone with him 100 percent of the time, but he should still have the ability to get up and move around.

DO YOU HAVE TIME TO LISTEN? HENRY LIKES TO TALK :-)

His mom joked that she hopes his ECMO specialists like sports. That little comment gives you a glimpse of the little boy underneath all of the machines, procedures, and medical terminology. Henry is still Henry. He's a kid who likes sports, likes to talk and, not long ago, was sitting with his nurse playing MLB on his PlayStation and knocking home runs out of the park.

That's the Henry his family wants back.

HELP IN ITS SIMPLEST FORM

Henry's mom said that her anxiety is high and that her heart is a mess. After everything this family has been through, she is asking for help in the simplest way she knows how.

"Please pray for my boy. He needs us."

PRAY FOR HENRY AND HIS FAMILY

So tonight, Henry's family is asking people to pray for their little boy. Pray for the doctors, nurses, and ECMO specialists who will be caring for him. Pray for his mom and dad and his sisters, who are facing an unimaginable amount of uncertainty.

And most of all, pray that this mechanical heart support does what everyone hopes it will do: keep Henry alive and give him enough time to receive the miracle heart he needs.

IF YOU WOULD LIKE TO HELP THE FAMILY

If you would like to help this family, you can make a donation to help the family with bills and trying to take care of their son, their family, and everyday expenses that just keep adding up.  Click HERE to learn more.