Tuesday, August 15, 2006

Pearson Family Heart Story Submitted by Judd and Arlene Pearson.

Tossing and turning in my bed for hours, it was 5:30am when I gave up on sleep to see my two year old son, Jeremiah, in the Pediatric Thoracic Cardiac Intensive Care unit. The hotel was connected to the hospital, so I didn’t even need a jacket on that cold February morning.

When I got to the entrance of the ICU, I had to call to gain entrance. The clerk on the unit told me that they were in the process of putting Jeremiah back on the ventilator due to respiratory distress. They would come get me when they were done. I called my husband back in the hotel room to come join me. A few minutes later, I heard an alarm sounding and more hospital staff start running into the ICU. My mind told me not to jump to conclusions, but somehow, my heart knew that the alarm was for a medical emergency – my son was in trouble. 5 minutes went by, 10, 15.

I called again. Still working on him. Called my sister back home to spread the news to pray. Another 10 minutes. I call again. Frantically, I tell the clerk, “If you don’t come get us to tell us what is happening, I going to come back there myself! He’s MY son.”

A nurse comes to get us. Trying to be as calm as she can, she tells us that during the process of re-intubating Jeremiah, his heart stopped. They were now doing CPR. Being a nurse I ask, “Did you defibrillate?”

“Yes. It didn’t work.”

I leaned against the wall, too shocked to cry. I don’t even remember what anyone else did in that moment. Stay in control, I told myself, or they will kick you out. I found my way to a rocking chair in the hallway outside his room. I couldn’t bear to look through the sliding glass door. I just wanted to be close to my son as he fought for his life. I needed to see how hard the staff worked to bring him back.

All I could find to do was pray, “God have mercy.”

Just two days earlier Jeremiah underwent one of the most complex cardiac surgeries; the double switch (arterial and atrial switch). He was born on August 1st, 2003 with beautiful brown eyes, thick dark hair, and several birth defects. He had congenitally corrected transposition of the great arteries, an atrial septal defect, Ebstein's anomaly, and a double aortic arch. This would be Jeremiah’s fifth surgery in 2 ½ years. And hopefully, it would be the final repair.

The surgery was a success and Jeremiah did well for the first two days. He started to have trouble breathing the second night which unexpectedly turned into a cardiac arrest. After the usual resuscitation efforts didn’t work, the ICU room was turned into a surgical suite and my son’s healing chest was cut open again. While one doctor did internal heart compressions, other doctors put Jeremiah on ECMO (extra-corporeal membrane oxygenator) - a last ditch effort for those who have no other chance to survive.

His blood left the heart through two tubes and circulated through a machine that would oxygenate it and return it to his heart through another tube. It wasn’t till Jeremiah was on ECMO that his heart started to beat again. However, it was not strong enough to generate a pulse; the ECMO machine would have to do all the work of pumping the blood through his body. Since his lungs were filled with fluid, the machine would also oxygenate this blood for him.
When we were finally allowed to see our son, he was barely recognizable. Blue, mottled skin. Face and hands swollen beyond belief. Tubes, cables, wires protruding from his body. A large bandage covered his chest that was left open – only covered by synthetic skin and gauze. He was still and cold. Yet the same soft black hair and the same cheeks I kissed every day of his life. I whispered into his ear that we were there with him and loved him. And I prayed that he wouldn’t remember anything.

Jeremiah spent 7 days on ECMO. Though he was deeply sedated, he responded to us by squeezing our hands, shaking his head yes or no to our questions, and squirming and fighting. He was on more pain and sedation medications than was usual for his size. But he was showing signs that his brain was intact after such a traumatic cardiac arrest.

At one point, Jeremiah’s heart function was so poor that we were told that he would need a heart transplant. He almost bled to death and needed 6 units of blood in one night. But he improved enough to come off the ECMO machine on the seventh day, and his chest was closed up.

But it wasn’t over. He had acute kidney failure and was on dialysis for two weeks. Then there was another cardiac arrest a week later, when his blood pressure dropped and they lost his pulse again. This time they did CPR for a minute and he came back. He finally came off the ventilator after three weeks. Then we found out he had brain damage from insufficient blood flow to his brain. We had other little scares from infections in his sputum and his incisions.
After 5 weeks in the ICU, Jeremiah was transferred to a rehabilitation hospital where he had to re-learn how to sit, stand, walk, talk, and eat. It took a month to wean him off the narcotics. But he amazed everyone with his progress and his spirit.

Today, 5 months after his repair, he looks like any other three year old, though skinnier than most and impressive scars are hidden under his clothing.

Miraculously, he has no residual signs of brain damage. His personality and memory were unscathed.

He has a mischievious smile, an incredible vocabulary, and tells us he loves us atleast 8 times a day. He loves Thomas the Train, Bob the Builder and any aquatic animal; we use this to our advantage whenever we need him to cooperate for the many medical appointments and tests he has to endure. Though he is able to lead a fairly normal life, his heart is weak after the last surgery and cardiac arrest. He is sustained with 5 heart medications that are given 2 or
3 times a day. The chance that he will need a heart transplant in the future still exists.

What is it like to have a child with a congenital heart defect? We try to treat Jeremiah as normal as possible. Yet every time we take him to the park it is far from normal. I am on the constant look out to make sure he is not out of breath or pale from overdoing it. When he confidently climbs the stairs and ventures down the slide by himself it is a victory over his condition and I want to shout to all the other moms, “Look what my son just did, can’t you see it’s a miracle after all he’s been through!”

I can count on one hand the nights he has slept through the night. When he wakes up crying at night, we always check on him with concern. The nights that we don’t hear him cry, I have to force myself not to panic or rush to check on him. My greatest fear is going to his bed and finding him cold and blue and I don’t know how I would be able to handle that horror.
Jeremiah doesn’t know that it is out of the ordinary to experience so much medical attention. On average, we visit the doctor every two months. He has Speech, Occupational and Physical therapy once a week. He has learned to lay still for one hour for the ultrasounds of his heart. He has endured monthly shots to ward off RSV infections. He will let anyone listen to his heart – even all the med students that want to hear his complex murmur. When he gets his chest xray taken he knows how to pose with his arms straight up in the air and his body strapped to a hard board. And after getting poked three times for his last blood test, he was rewarded with a sticker and had the nerve to say, “Mom, that was fun!” The last time he had to wear a
24 holter monitor, he treated the stickers, wires and machine with greatest caution and pride and called it his “wallet.” Then he cried when I had to take it off.

We love all our children with the same intensity, yet when Jeremiah wraps his arms around our necks and gives us hugs, it is so much sweeter knowing that we almost lost him. Every milestone is a celebration!

We even treasure the tantrums and defiant two year old behavior, and have to fight back the smiles as we discipline him. Acceptance of his diagnoses has come in stages; after spending time in anger, anxiety and depression, I can now truly believe it when I say,
“God did a great job when he made Jeremiah.”

My husband and I have contemplated and discussed life expectancy and mortality rates for our son and he hasn’t even started preschool. We have kissed and hugged him and then handed him over to too many masked OR personnel. Then we always worry if we made the right decision and we wish so much that we could take his place. We have watched as other parents have lost their children to heart defects. Now, instead of thinking, “It will never happen to me” I think, “Why shouldn’t it happen to me?” One day, when he is older, we know he will ask the difficult questions; “Why was I born like this? Why me? Will I die from this?” We pray for the wisdom to answer his questions with honesty and hope for the future.

Through his struggles, we have found that God is faithful to provide us with strength and peace. We have witnessed the power of prayer. We have experienced the incredible love and support of our family, friends and even strangers. Like his name’s meaning, we know that Jeremiah was sent by God to inspire many who will hear his story and have courage to withstand their own deepest trials. We live with great joy for having the privilege to know and love our son. We live day to day with great hope for the future. But we have also learned that these children are not ours, but God’s. And we hold them, lovingly, with open hands.

Check out Jeremiah's carepage at http://www.carepages.com/ServeCarePage?cpn=JeremiahP

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