I would like to thank the surgical team that cared for my son, not only during his surgery but also in the weeks before, the moments in pre-op and his time in recovery. His care was truly one of patient and family-centered care that could not have been achieved if it wasn't for the teamwork of this very compassionate and caring group of individuals. My son has Fragile X and Autism. He is an amazing young man with many outstanding qualities. However, in many situations, all of his positives are overshadowed due to the challenges he faces. He very much wants to be successful at everything he encounters, but many times because individuals fail to see him and understand his needs to be successful, things don't go well and he becomes fearful, anxious, and frustrated which can set the tone for future endeavors. None of this was the case for his surgery.
When I learned of my son's upcoming surgery I reached out to Maureen Bowman, VP, and CNO to see who I could talk to about my son and possibly taking a picture of the areas he will encounter for his surgery. For my son the more planning and preparing, we can do the better. I knew there was a program where kids could come for a walk through to see the surgical setting, but I knew for my son this would not be a good option for him due to his anxiety. However, if l had pictures and could discuss what would happen in each area that may be helpful. I say ‘may’ because I have learned that not all things work for all settings and we try one thing but are always ready with plan b, c, d and so on. Maureen, in turn, reached out to Amanda Nash, Director of Anesthesia who contacted me immediately to set up a meeting. I couldn't believe the individuals who took time out of their day to learn about my son and how they could help him be successful at having his surgery. They were truly vested in hearing about my son and what I thought would help him. They told me how they normally do things and that they care for many children every day, but they never made me feel like my son was one of the many, and that the meeting was just to comfort me. Everyone showed compassion and caring for my son’s condition and participated in brainstorming on how to meet his needs. Michele, from children services, brought a booklet with pictures of the areas which was so comforting. The meeting and receiving the booklet was overwhelming. As a mom with a special needs son, there are so many times when I feel alone in the battle of supporting him. For this adventure, I didn't feel that at all. After the meeting, Sandy took me down to the children's surgical area and gave me a tour, so I would have a better understanding and could prepare my son as best as possible. She also gave me a support device he would have to wear after surgery, a drain that he more than likely may have for a day or two after, and surgical hats he and I would be wearing to go into the operating room.
During the week prior to surgery my son and I reviewed the book several times and discussed what would occur in each of the pictures. Thanks to the tour I was able to add additional information like the potato heads that are in the waiting room. He was able to hold the drain and ask questions and decided they were more like straws so that is what we called them. The morning of surgery we felt prepared and put our surgical hats on and danced a silly surgery dance as we got ready.
When we arrived at the children's surgical area he pointed things out from the picture, said hello to the receptionist, received his band and found the potato heads. Michele was waiting for us and set my son up with a DVD player and a Sesame Street video, his favorite. I knew we were going to be okay. In pre-op, he was emotional and struggled a bit with his IV, but his nurse was wonderful. She didn't keep pushing or get upset, instead, she turned to me and asked: "mom, what can we do?" I gave a suggestion of what might help, knowing my son, and she didn't hesitate to try it. The IV was successful. We had this dialogue a couple of times and when they came to take us to the operating room I heard her tell the gentleman that was moving us, "Ask mom for help, she is great at calming him". I quietly thanked God and knew we were going to be okay. I got to go in with my son while they put him to sleep for surgery and while they did what they needed to do I was able to talk to my son and calm him while he went to sleep. I don't think I mentioned, but my son has impaired speech and it is often difficult for others to understand him, which adds to his anxiety and frustration. So being with him every step of the way was so very important to me.
Not everything went without a hitch, my son woke up before I was brought back to be with him, so he was fighting to get away from everyone and everything. However, when I came to his bedside everyone made room for me to get close to him and was receptive to following my suggestions for calming him down. He did have a complication and was taken back in for a second surgery. I can't even put into words how scared I was, but there was comfort in the compassion and caring manner everyone showed to my son and me. I was really frightened of him having anesthesia again so soon. Dr. Meza calmed that fear by explaining what he was going to do. I have no clue what it was, but just that he took a moment to talk with me made me feel like we were going to be okay. I again got to go into the OR and sang "Sunny Days" from Sesame Street while he went to sleep.
My son came out of the second surgery just fine and I was at his bedside way before he woke up. The nurse prepared me for things that may occur as he comes out of anesthesia and we talked about many things. My son was a little startled when he woke up but was easily calmed with no need for holding him. He did have "straws" which he ended up having for a week and he did great with them. I can't thank Sandy enough for allowing us to explore those "straws" prior to surgery. They were in place he couldn't see them so having seen them and touch them previously was a huge help. My son was able to go home that night, and on the way out a nurse came up behind me, put a hand on my shoulder and said, "thank you, I get it now" and I thought he is going to be okay, people are going to see him and understand him.
I can't thank everyone enough for the great patient and family-centered care my son and our family received that day. God bless each and every one of you.
I know this is long, but I would like to mention a couple more standout moments. While I sat in the waiting room by myself as my husband took my younger son to his uncle, as it was getting to be a little too much for him, Barb and Amanda came to sit with me and talk. They were wonderful at keeping my mind busy and keeping me from crying as I didn't want my son to wake up and see me worried. I couldn't tell you what we talked about, but a few days later I received an email from Barb with the number of an oral surgeon who practices at Beaumont and had cared for a family member of hers. She also commented on my family and how she was glad for the opportunity to care for my son. We are going to be okay.
I also, want to mention Dr. Liss as he was a big part of this team as my son's surgeon. He was wonderful from the start. From the day we walked in his office, Dr. Liss has always seen my son first, he talks directly to him, asks him questions, makes an honest attempt to understand his responses and only looks to me if he needs help. What I put in my letter to Dr. Liss applies to everyone in my son's surgical team, you are all an amazing group of people and I pray my son encounters many more individuals with the values that all of you bring forth in the care you provide.