Lucas’ Success Story

Published on: 01/15/2018
My son Lucas was admitted to Nicklaus Children’s Hospital on August 15, 2017 to treat his uncontrollable seizures. After being admitted at a previous children’s hospital on three consecutive occasions and after many EEGs, we were referred to Nicklaus Children's by a neurologist. My family and I were exhausted, overwhelmed and a bit fearful about the outcome of yet another hospital stay. 
Upon his first admission, the neurologist in charge would order an EEG and lab work to start the hospital admission process. To say that each day at the hospital was a difficult experience, is an understatement. For a child that has never been confined to a bed, being visited every two hours by a medical team for lab work and/or vital signs was always accompanied by tears, fear and anxiety. Upon arrival at Nicklaus Children's Hospital, the Child Life team in the Emergency Room was nothing short of phenomenal.  The minute the medical staff understood Lucas diagnosis with epilepsy and autism, they did not hesitate to act promptly to cater to his needs.  Lucas face would change immediately the minute he saw someone in the room that was not there to “pinch” or “poke," he immediately learned their names and, whenever he would see him, he would call “Mr. Q” in his unique sweet voice.  I would have to remind him time and time again that “Mr. Q works in the ER”.
His experiences with hospital stays prior to his admission at Nicklaus were extremely difficult and the trauma that accompanied each stay did not make Lucas feel any better.  Just to get blood work from him would take five people to hold him: I would hold his lower body, while another person held his leg, another would hold his head and two others his arms, while I would whisper in the softest, calmest voice I could find withholding my tears: “it’s almost over honey, take deep breaths in and let it out”, “keep breathing Baby”, “we’re almost done."  I would hide my face to avoid him seeing my tears. It was very hard seeing my son in such discomfort. It was difficult to be there. At times I would tell the nurses to “poke” me instead. They would all chuckle because they knew that it needed to be done. I am not going to elaborate on the rest of Lucas stays, because they entail a lot of tears and rage onLucas' part and a close brink of despair for Mom, Dad and baby sister.

Upon Lucas first admission at Nicklaus Children’s Hospital, as soon as they knew Lucas was a special needs child the Child Life team rushed with not one, but two goody bags! One for Lucas and one for his baby sister. Ms. Lindsay and Mr. Q rushed in to meet Lucas and Sophia making sure they were okay and that Lucas was not too anxious about being there, Mr. Q whispered to me about Lucas' likes in terms of toys. A few minutes later he would show up with the exact toy Lucas would love.  Although the medical team was informed about Lucas’ previous hospital experiences, they brought in as many people as possible to help in every way and in any way they could.  The Child Life team was  always especially concerned and caring towards meeting Lucas’ needs.  To my shock and surprise the blood draw was not the same traumatizing event we had encountered in previous hospitals. In fact, Lucas' admission at Nicklaus Children's was a breeze! Thanks to the amazing medical staff and the unconditional support of the Child Life professionals.

The following day, a staff member came into Lucas’ room to introduce herself as his Child Life specialist. She had  the sweetest, most energetic personality I have ever encountered and said “Hi I’m Caroline, I’m here with Child Life”.  She did not hesitate to interact with Lucas right away and even brought him a toy to play with. The sense of relief I felt after meeting her was indescribable; At last someone who understood and someone that can come in for something other than bringing medicine or do blood work! She immediately wrote her contact information on the board, took her time to speak to me and listen to my concerns, expressing over and over that she was there to ensure Lucas felt as comfortable as possible and that she and her team was there to make it happen.  Ms. Caroline showed the highest level of compassion to my son and my family.  That along with her genuine personality turned her into what I discovered her to be: “our Guardian Angel”. 

What I expected her to do the least, she would do the most.  She went above and beyond in ways we could have ever imagined. "How can we best help Lucas have the most comfortable experience as a patient at Nicklaus? What do you need me to do? What can I bring you?" Were some of the many ways she expressed concern. After she would leave the room, and to my shock, she would come back with a bundle of toys to make sure Lucas felt at ease and most of all happy.  All throughout the day, Ms. Caroline would pop in Lucas’ room, to make sure all was well, not just for Lucas but for everyone in the family and to remind me to call her immediately if any procedure was to take place. The level of care provided by Ms. Caroline and the Child Life team was completely satisfactory in every level. Her concern toward Lucas, his level of comfort and wellbeing was so genuine that each night after Ms. Caroline would finish her duties, Lucas would always call for her.

Every morning, upon starting her shift, Ms. Caroline would turn in to say hello and checking in on her little patient.  As a parent, it was such an honor and so touching to see someone who cared so much for him as she did.  Lucas was completely drawn to her. So much that once he got discharged and needed to return for his follow up, his anxiety about returning to the hospital eased and disappeared each time I would mention Ms. Caroline. The level of care and hospitality provided by Ms. Caroline and the Child Life team would always be regarded as one of the most memorable hospital experiences my son and my family has ever encountered. 

I dream that one day every hospital around the world can learn about the importance of having a group of compassionate individuals who can cater to the concerns of its patients, ensuring that their stay is as memorable and as satisfying as my family’s experience was at Nicklaus Children's Hospital, thanks to the outstanding support of one amazing group of people who has the highest level of compassion and genuine level of care for its patients. Thank you Child Life for making my son’s hospital stay an unforgettable and pleasant one. ~ On behalf of Lucas’ parents, Alyda Inoa and Michael Latchmansigh.

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