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Zander' s HLHS Journey

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On October 17, 2017, Zander was born with a condition called Hypoplastic Left Heart Syndrome (HLHS).  The left side of his heart did not develop properly.  This is a  rare  congenital defect that occurs often for no understandable reason.  There is a series of 3 surgeries that help to reconstruct his heart so the right side of his heart can do the work for his whole body. 

The first surgery was completed on 10/23/17, at 6 days old, called the "Norwood procedure".  He is scheduled to have the second surgery on 12/5/2017 called the "Glenn procdure"- which is usually completed  around 6 months old, however Zander has shown that his heart is not able to profuse blood to his entire body adequately making it necessary to do the "Glenn" earlier than planned.  In addition to the HLHS, he also has a severe Triscupid Valve leak and they will be repairing this at the same time.  The third surgery is anticipated around age 5 called the Fontan.  (For those interested in learning more about this condition and the surgeries we have supplied a link to the Children's Hospital of Wisconsin website    https://www.chw.org/medical-care/herma-heart/conditions/hypoplastic-left-heart-syndrome 

A common complication of the Norwood surgery resulted in a paralyzed left vocal cord which will impact Zander's ability to  speak, eat and get adequate nutrition.  He has been getting fed via a feeding tube at times during his hospitalization, other times he has not been fed due to other complications and set backs.  He will most likely need a feeding tube on a long term basis to ensure he gets the nutrition he needs to gain weight and get stronger.

Zander has been at Children's Hospital in Milwaukee since his birth, the majority of that time in the Cardiac Intensive Care Unit.  Mom, Sarah, has been at the hospital this entire time and it is expected that they will be hospitalized for at least another month or so. Dad, Josh, has been driving back and forth from the hospital to home to work his shifts.  A 4 hour one way trip -- and lots of miles on the car.

Medical bills are rising and the cost of living expenses while staying at the hospital are quite high.  Due to how critical Zander's medical condition has been, Sarah has not been able to return to work as she needs to be close to him.  This has meant that Sarah and Josh along with Zander have been away from their family and support network for almost two months already and will be for some extended time ahead including  over the holidays.

Sarah and Josh have been staying at Ronald McDonald House which has been a lifesaver but even so, there is a lot of unanticipated expenses for meals and other incidentals because they are so very far from home.

 We have been very grateful for all of the love and prayers shared on this incredible journey and ask that you continue to share love and prayers.  However, we also ask for monetary donations to help lessen the stress of managing household expenses such as rent and utilities while living at the hospital.  Also we are requesting donations to help offset Zander's medical expenses which include hospitalization costs; living expenses while at the hospital; gas money for Josh to travel back and forth for work but also essentials to get Zander home that include medical equipment and specialized therapies such as physical, occupational and speech therapy.

Thank you for your love and concern.
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Donations 

  • Davia Curran
    • $20 
    • 6 yrs
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Organizer

Sarah Zunk
Organizer
Rhinelander, WI

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