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A sad day indeed

Thursday, April 10, 2014

January 2005 - Our second grand child, named Malayna, was born. My step daughter, Jennifer, was happy and scared all at the same time. You see, Malayna was born with half a heart, more commonly known as Hypoplastic Left Heart Syndrome. She found out when she was 7 months along. She was given a choice...go to Kansas City and have a late-term abortion or see if the baby will carry to term. She chose No. 2. She would not be able to live with herself if she did not.

So, Malayna entered the world on January 24, 2005. Two days later, she had her first heart surgery. At Children's Hospital in Philadelpha, Dr. Jeffery Norwood performed his Norwood Procedure. Took arteries and veins from other body parts to re-wire her heart to (somewhat) perform normally. She was the worst they had seen that was brought to term and survived the surgery.

Over the years, she has developed other problems, but there were many highs too. When she was 1, she developed cyclic vomiting. She threw up once a month for 5 days. The doctors thought it was related to migraines and that she would grow out of it. She did when she was 6 and then those migraines started. In 2012 she developed a condition called plastic bronchitis, where her lungs had these spidery-like mucus threads. She developed really bad knees that looked like baseballs, but got better with physical therapy.

She was as normal as she could be. She enjoyed all the holidays and was a ham in pictures and on video.

Over the years, they had to use some very unusual medications and procedures because Malayna most times did not respond to traditional treatments for her kind of condition. What they learned from her they used with other kids and saved lots of lives.

Fast forward to 8 weeks ago. She had a large build up of fluid in her body, especially around her heart and lungs. The bad news was that her heart had weakened. The team got together and with Jennifer, decided to do a lymphography. They mapped all her blood vessels to determine leaks. They used a thing similar to glue for aneurisms to seal the big leaks. The scary part was being under anesthesia so long. She survived. Jennifer was able to sleep in the same room with Malayna. Malayna was alert and responding. She loved receiving care packages. Then the team decided to do a bronchioscopy to remove the spidery mucus. She did "code blue" twice. They were able to bring her back fairly quickly. After the second time, they said no more procedure. By then, she had to be intubated because she could not adequately exhange air on her own. Her kidneys started responding and taking the fluid away. But because of the catheter for her to pee, she developed a UTI and also a lung infection. She was given antibiotics for those.

Then three days ago, the over night nurse practitioner ordered Vancomycin, which she is allergic too. She had a violent reaction. To counter act that, she ordered Benedryl which she is also allergic to. Well documented in her chart. She was now on the edge, but still clinging to life.

Yesterday, at 9:30am she coded again. This time it took 8 mintues to get a pulse. Still clinging, she lost her battle and passed away at 6:25pm last night.

She is now an angel. She is no longer sick. She is looking after everyone. She did what God sent her to do and now she is in Heaven to do other work.

We love you Malayna.
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