By the end of his stay, he had one of his legs amputated, and required a tracheostomy tube and ventilator to breathe. His health deteriorated quickly and upon discharge from the hospital, he was referred to Weisman Children’s Rehabilitation Hospital to begin his road to recovery. The uncertainty surrounding his condition could be devastating to many, however, Samir never once lost his positive, easy going attitude; something that remained crucial throughout his rehabilitation stay.
Samir began his journey with Weisman Children’s in August 2021. Due to his multiple needs, Samir was a patient who worked with many of our departments and staff. The team’s biggest goals for him were teaching him to walk with a prosthetic leg, getting him breathing and eating on his own again, and starting him on a diabetes treatment plan to manage his diabetes and help prevent future negative outcomes. The amount of time and care dedicated to Samir was not something that was lost on his mother, Alexis. Alexis was at the tail end of her pregnancy with Samir’s future new sibling when he was admitted to Weisman Children’s and said the support extended beyond just her son’s care.
“They were really great to him and that even included me. I was pregnant when he first was admitted and due any day. They were supportive and made sure he did not feel alone at any time. My son is very laid back and they often encouraged him to come out of his room and play games and interact with others to make him feel comfortable. I really think it helped him a lot in keeping him happy and positive through all of this. To me that was almost as important as the care he received and it really helped put me at ease. They always called me and made sure I was involved and included even though I could not physically be on location as much as I would have liked at first.”
Samir’s first step to recovery was eliminating his need for a ventilator and removing his tracheostomy (trach) tube to provide him the ability to breathe, eat, and talk normally. Shane Pelletier, RRT, AE-C, Respiratory Therapist for Weisman Children’s said that Samir adapted to these changes well and importantly did not resist any suggestions that the team made to get him where he needed to be, “Every morning he was so nice and well-mannered, once he could speak he always said thank you. One of the most compliant patients I have ever had.” Shane joked, “I told his mother he needs to complain more.”
While his respiratory care was progressing, Samir was also working with Weisman Children’s Speech-Language Pathologist, Kristen Soranno, to address eating, drinking, talking and his cognitive skills. “When he came in he could not eat or drink anything by mouth because of overall deconditioning and respiratory compromise. Right away, he wanted to start strengthening his swallow to begin drinking again. He was so dedicated and focused. It was so exciting getting him to eat again and being the one to let him pick what he wanted to eat first. He had not eaten a real meal since February, and by this time, it was September. He did so well that at the end of his stay, I wasn’t even seeing him for feeding therapy anymore.”
Another important phase in Samir’s recovery was learning how to live and function with his new body, a task that Kristen, Occupational Therapist Alexandra Poporad, and Physical Therapist, Amy Miloszewski, assisted him with throughout his time at Weisman Children’s. While addressing feeding and speech, Kristen also worked with Samir on complex cognitive tasks. She worked on teaching him ways to remember the new tasks he was learning in occupational therapy and physical therapy. While this collaborative effort made a big difference on his recovery, Samir never seemed discouraged or worried about his condition. Something that was apparent to Amy from day one.
When he first came into Weisman Children’s care, Amy started working with Samir daily to get him and his body ready for his prosthetic leg, with the goal of eventually teaching him how to walk with it. “The first two months I worked with Samir we focused on preparing him to get his prosthetic leg. We tried to get him weight bearing as much as possible; getting him moving with a rolling walker and independently moving with his wheel chair. He did really well with those until his prosthetic leg arrived, where then we began to shift focus to teaching him how to move with his new leg.”
Samir had such a willingness to accept his new leg, which is something that can be a struggle for some patients. Amy believes that helped contribute to him adapting to the prosthetic leg so quickly.
“He really embraced it right away. The day the prosthesis came, they came in his room for the fitting and he was really excited and learned how to put it on and take it off. He learned how to stand with it almost immediately. We offered him a chance to take a couple steps with it and we wound up walking 300 feet that first time. By the time he left us, we considered him independent to walk with his leg. He was able to walk 4 hours at a time. It was really remarkable.”
Alexandra worked with Samir almost every day of his stay for his occupational therapy needs, focusing on finding new ways to preform everyday activities such as getting dressing, showering, and standing to brush his teeth. “Our main goal was finding alternate ways for Samir to do those tasks. We had a heavy focus on learning how to transfer from one position to another like how to get out of bed, how to stand and balance in order for Samir be more independent with his self-care tasks and maneuvering around his environment. Improving his upper body strength was another focus because he relied heavily on his arms to support him as he learned to walk with and without his prosthesis.”
While Samir was always easy going and determined, his personality really started to come through as his health improved over his stay. Alexandra continued, “He was my 8 AM patient, I became like his annoying big sister. Overtime he started doing these activities more on his own. Eventually as he progressed, he would be sitting up on the side of the bed and be ready for me at 8 AM. At this time, his personality started coming out more. He loved telling jokes and he always had jokes ready for me.”
Another team that worked with Samir from day one was the Weisman Children’s Diabetes Management team. Alexis Blandine, MS, RDN, LDN, Registered Dietitian, worked closely with Samir to teach him to self manage his disease. “At the beginning of his stay I was introducing him to the basics about diabetes. There were many changes going on for him at that time so we wanted to start by building up his knowledge base. As he started to make strides with his therapy, I started to build upon that. I was seeing him two or three days a week and he was an absolute joy to work with.”
Blandine worked closely with Samir to make sure he would not have to stop enjoying his favorite foods completely, just modify his diet enough to keep his blood sugar at appropriate levels. It was something that Samir was very open to improve on. “We worked on identifying the different foods that would impact his blood sugar. Diabetes is one of the most intensive chronic diseases. He never refused anything I asked him to do. He was always very open to learn and adapt. I was very impressed with his ability to carry over what he learned from day to day. Considering all that happened to him, he was still a very pleasant child to be around.” Like others that worked with Samir, Blandline remembers his jokes as a stand out while working with him.
“The first thing we bonded over was ordering his food. He was very particular about the veggies he would not eat. He did not like carrots and it became a running joke. Then we started having jokes every day with each other, which was fun. He had so many funny jokes. We would break up the teaching with jokes and that became our little thing.”
His mother Alexis admitted that she believes the compassion and work from the team made a difference in Samir’s joking personality coming back out, “I was so happy when he started telling his jokes again. Before he was sick, he would tell us a joke every day. I really feel like the team was able to bring that back to him. He started to sound like my son again.”
Another thing the team learned about Samir over his stay was his love of Star Wars and super heroes. Weisman Children’s therapeutic recreational therapist Alexis Gonzales incorporated that into her work with him to help him stay engaged during his recovery. Gonzales explained, “We made a comic book out of his medical history to help him understand. We made sure to highlight all the different things he was working on in therapy. As he went through all his medical procedures, he would write it down. We kept adding to it until he was discharged and had it laminated so he could use it help explain his journey to his friends and family.”
His mother greatly appreciated how much effort the team put into personalizing his care and the comic book was the icing on the cake, “I was happy that he was able to make a bad situation into something he could look back on and reflect on positively. The team made us feel we were all family. It is something we will remember forever.”