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Patients in the Spotlight: Lexie Hobart

Letter from Grateful Mom: Rainbows for Lexie

Golisano Children’s Hospital is fortunate to work with incredible families who, despite being faced with great adversity, take time to recognize and appreciate the value of quality medical care. Read what Jennifer Hobart had to say about the care her daughter received at Golisano Children’s Hospital.

Lexie HobartThe word hero is defined as “one with distinguished courage and ability.”  I don’t know who deserves this title more than the staff at the Golisano Children’s Hospital at the University of Rochester Medical Center. The nurses, doctors, and specialists at the Children’s Hospital are the most caring, compassionate and dedicated group of professionals I have ever encountered.  Each of them has amazing courage to work in such a delicate field and have the ability to work successfully within that field.

My daughter, Alexis “Lexie” Grace Hobart was admitted to the Pediatric Intensive Care Unit (PICU) at Golisano Children’s Hospital when she was 7-months-old. She was admitted on June 13, 2007, and spent three agonizing weeks in the PICU. Until that day, Lexie had been developing normally she had no issues, physically or otherwise. Lexie was suffering from a series of febrile seizures. These seizures occurred consistently in multiple areas of her brain for nine days. Doctors and specialists ordered test after test to determine the cause and the cure for my daughter’s symptoms.

Lexie’s first nurse, upon being admitted, was Jody. Jody was supposed to be Lexie’s transport nurse; however, she refused to leave Lexie’s side. She remained with Lexie and me into the evening hours, well beyond the time that her regular shift would have ended.  She called Lexie her “Sweet Pea.” She even stopped by to check in on Lexie during our time in the PICU.

It was very difficult sitting at Lexie’s bedside day by day wondering if this would ever end; would I ever see those beautiful blue eyes again? She had so many wires attached to her small body.  It was difficult to tell where they ended and she began. At one point, she had a feeding tube inserted in her nose, two IVs (one in her forearm and one in her neck), four patches on her chest monitoring different things including heart rate and her breathing pattern, a ventilator breathed for her and she had countless EEG wires glued to her tiny head. As a mother, I felt so helpless. My child was suffering and there was nothing I could do about it. Cheryl, another one of Lexie’s nurses, noticed this and came into the room. She started talking to me about Lexie and told me how beautiful she was. She showed me simple tasks that I could do for my girl that would help her and, ultimately, help me. As an example, she showed me how I could stretch her muscles to prevent atrophy, and she also showed me how to prevent her eyes and mouth from drying out. These were small things, but it allowed me to feel less helpless.

Dr. Jeff Rubenstein was the pediatrician assigned to my daughter’s case. This man is so dedicated to his patients that he came in to check on Lexie, even on his days off. He constantly kept me informed about the tests that were being ordered, the theories that were being formed, and he always remembered to take the time to answer all of my questions. I felt very knowledgeable about my daughter’s condition at all times. When I thanked him for coming in he said, “It’s hard to forget friends.” With that, he affectionately looked at Lexie lying in her bed.  He provided tremendous support to both my daughter and myself during this difficult time.  Despite the countless tests, theories and treatments, not one could locate a cause; and worse, no one could give me a prognosis for her condition.                   

In an attempt to decrease her brain activity, Lexie was placed in a medically-induced coma. She remained in that coma for approximately two weeks of her hospital stay. Dr. Nina Schor was the neurologist on duty upon Lexie’s admittance to the hospital. Dr. Schor checked in daily to update me on Lexie’s progress. She was the one to deliver the glorious news on June 21, 2007 that Lexie’s seizures had finally stopped! At this point, she was on three different types of seizure medication to control the seizures. Slowly she was successfully weaned down to one type of medication without subsequent seizures.

On June 29, 2007, after several long weeks, we were discharged. They were finally letting me take my daughter home! Lexie had spent a total of 17 days in the hospital.

It has been three and a half years since that difficult summer and a lot has changed in our lives. Lexie has been diagnosed with spastic quadriplegic cerebral palsy and epilepsy. Lexie has been seizure-free since June 21, 2007. She attends an integrated preschool at CP Rochester where she has a one on one aide and receives multiple therapies on a daily basis and regular follow ups. She has limited use of her right limbs, but doesn’t let that stop her and is learning to sit up and walk. She is a strong, determined child and is even getting ready to start attending kindergarten in the fall. Additionally, Lexie has a team of doctors from Golisano Children’s Hospital that continue to follow her case closely. Lexie continues to amaze everyone with her determination throughout all of these obstacles. On a daily basis, she wears a right hand splint, AFO bilateral braces on both legs, and the brightest, most beautiful smile ever.

We know that Lexie’s success is, in part, due to the tireless efforts that she received while at Golisano Children’s Hospital and continues to receive through outpatient care. We believe it is important to give back to those that helped us in our time of need, and for the past three years, we have been a part of the Rainbows for Lexie team for Golisano Children's Hospital's Stroll for Strong Kids fundraising walk. Every year we get bigger and stronger as a team, just like Lexie. I love attending the stroll every year. The nurses are so invested in their service that even now, they still remember Lexie, and it’s great to check in with them every year.

These individuals are the true heroes! They have elected to take on this charge, despite the sadness and despair that they encounter daily.  I am amazed at how well these individuals work with their patients and their families. Through it all, they remain strong and, most of all, positive. They have the ability to make you feel that you are the most important case they have.  It is evident that all of these people truly love what they do. I am forever indebted to the efforts of the countless men and women within the PICU who worked above and beyond to return my daughter to me.

Click here to make a donation to Golisano Children's Hospital on behalf of the Rainbows for Lexie fundraising team.