LUKA'S STORY

Before I provide an update on Luka, I would like to take time to express gratitude for the life changing equipment WWK has gifted our little guy. The tomato and bouncer chairs donated in the past give our nurses/myself more options when repositioning Luka, which in turn, has helped in maintaining skin integrity and has improved Luka’s quality of life by providing comfort and support. Making each day a happy day for Luka is our goal and WWK has been essential in achieving that. 
 

As you know, Luka has a history of shaken baby that lead to a severe seizure disorder, gastrointestinal tube dependency, airway clearance impairment, and blindness. He struggles with muscular contractures, moodiness/irritability, pain, and lacks the ability to sleep well. Due to his condition, Luka qualifies for home nursing care. Recently his nursing hours increased to 24/7 due to obstructive hypopneas, apneas and the need for Bipap during the night. 
 

Because of everyone’s continued efforts and my choice in keeping Luka on a homebound status, Luka’s health has remained stable with no emergency visits. However, Luka has grown significantly in the past two years as most kids do at this age. He will be 5 in May! Time flies! August 2021 he weighed 41 lbs and during our last physician visit in February he was 60 lbs. Yes 60!!! Our focus with dietitians in 2022 involved reducing calories while meeting nutritional needs. We switched formula, reduced the amount of formula given per feeding, and Luka just continued growing. We finally came to the conclusion that he’s just going to be a big boy. He’s thriving! 
 

The difficulty with this is nurses have carrying limits, 50-60 lbs is the maximum weight allowed by home healthy agencies involving single person lifts and transfers to avoid back injuries and also as a fall precaution for Luka. This is where a Hoyer Lift comes into play. We have a standard hoyer lift in the home but it is just too big for the rooms…