Advocacy, Special Needs

Her Heart Stopped and Mine Did Too.

April 3, 2013. The day had come for Kaydence to go into surgery. A surgery that would last 5 hours. My baby was just 4 months old, and we could not wait any longer to have the surgery done. The holes in her heart were making it hard for her to maintain enough energy to eat. I remember arriving very early that morning. Surrounded by family. I remember carrying her to the OR doors. I looked inside the room, everything seemed so big compared to my 6 pound baby girl. I cried walking away from those doors as I handed my baby over to the surgeons who would save her life.

It is a feeling like no other. Fear, anxiety, hopelessness, and anger flooded my body. Why? Why my baby? What did I do to deserve this? Why did God give me this baby? Why would he think that I was suitable to be her mother? Years later, these answers came to me. I began to realize that she was a gift, not a punishment. She changed my life in ways that I never thought possible.

Her surgery went well, and after 5 long hours she was moved up to the cardiac intensive care unit. I though leaving her at the doors of the operating room was hard, I had no idea what was coming when I walked through those doors to see my baby covered in IV’s and monitors, and on a ventilator with a chest tube. It was a sight not for the faint of heart. Her little body was swollen and she was still sedated. I was told that they would take her off the ventilator within a couple of hours. After all of my family who were there came in to visit, they went home after a long day at the hospital.

Everyone left, and it felt surreal. I was not sure what to do with myself. I know that everyone left to give me time to settle in, but that is NOT what happened. Within the hour, every monitor in the room was going off and a flood of doctors and nurses came pouring into the room. I remember screaming, asking what was wrong with my baby. I got no response. And then. These words. Word I will never forget. One of the doctors yells “Grab defibrillators!” I though, right then, that I was losing my baby.

A doctor turned around and told me that he needed to administer a medication to stop her heart for a few seconds and then restart her heart to get it back into rhythm. I have no recollection of what happened next. I stood in silence with tears running down my face. The next thing I remember is a team of doctors pulling me into the hallway to finally explain what was going on. They told me that Kaydence was suffering from junction ectopic tachycardia. A rare condition where the heart goes into a series of arrhythmia’s. Her heat rate remained high for weeks, in the 230’s – 280’s. It was terrifying. They tried several medications, and kept her sedated, as she had to remain on a ventilator. They used morphine to keep her comfortable and sedated.

After about 3 weeks, they decided to place her on a cooling blanket to lower her core body temperature in hopes to slow her heart rate and then be able to raise her core temperature back up to normal. Finally! Something that worked. While this significantly lowered her hear rate, she was still suffering from arrhythmia’s. She was put on a medication to help with the arrhythmia’s. I was told that her heart was just in shock, and needed time to heal.

She was finally able to come off of the ventilator after nearly a month. It was an amazing day! Over the next couple of days we worked on weaning down all of the morphine and sedatives so that Kaydence could finally start waking up, only to realize that she had become dependent on the morphine and would have to go through withdrawals. I am not sure what was worse, the defibrillator situation or having to painstakingly watch my infant come off of an addiction to morphine. Her body would shake, she would scream for hours. At times I would give in and allow a small dose just to give her some relief. And then i dealt with the guilt of giving in.

An anticipated week long stay after surgery very quickly turned in to a 6 week adventure. Not an adventure I ever wanted to go on again. But of course, it was inevitable that she would be back in that hospital many more times.

Over the last seven years, Cincinnati Children’s Hospital and Medical Center has become our second home. While I never want to be there seeing Kaydence suffer through whatever ailments come her way, I do know that we are so blessed to be 20 minutes away from a nationally ranked Children’s hospital, that has saved my daughters life on more than one occasion.

One Year Post Op!

I will place the links below with more information on Junction Ectopic Tachycardia and Cincinnati Children’s Hospital and Medical Center. Thank you all so much for taking the time to read, and follow our story! Feel free to follow our blog, and share our story!

Links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502046/

-Brooke

Advocate Like a Mother, LLC

Advocate Like a Mother, LLC offers a free consultation to help you understand how an Advocate could help your child receive the education that they deserve.

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