This post details about our son's fifth surgery. Please check out past blog posts to read about his previous surgeries and everything leading up to them.
In the summer of 2016, we scheduled the next surgery for our son. He was to have a nose reconstruction done. In the past surgeries, the goal was to ultimately close the gap in his mouth. Not much attention was put to the nose at that time. Now they wanted to create two equal nostrils with the piece of skin in between the nostrils (columella) added. At that time he was missing it completely.
He had also developed a hole in his palate repair. This is common with palate repairs. As the palate grows, the repair can separate and need minor repairs. He had just turned 2 in July of 2016 and was becoming more aware of things around him. He was more mobile and could walk and run around. He also understood what was happening as it happened. He knew he was in the hospital and was going to see a doctor. I do not think he knew what he was there for though. Just as we did before, we prepared, we planned, we packed, we checked in, and we went to pre op. When we went to say goodbye at the surgery door, he started to cry and to yell for me. As I walked away he continued to yell for me. My heart broke and it was almost too much to bare. I do not remember what I was working on at the time, but I was able to pass the time by focusing on something. I may have found a good book and focused on that. At this point all of the surgeries start to blend together.
The surgery was a success! The surgeon was able to reconstruct the nose and the fistula was repaired. He was hoping to smooth out the lip repairs, but there was not enough blood supply after he worked on the nose and he thought it was something to do down the road at his next surgery. We did not have a specific surgery or date in mind at this time. He figured that he would be able to do it whenever he did the next step, whenever that may be.
He was supposed to retire that last year, but he loved his job and patients so much that he had extended his time with his practice. He was no longer accepting new patients, but was working with those patients who he had been working with. He wanted to see the surgical plans through and wanted to work as long as possible part time. This was our last surgery with him, but we were so lucky to have him as our surgeon. His talent in the operating room, his bedside manner, and his genuine concern and love for his patients is one out of a million.
We stayed in the hospital for a day and a half. Then he was released home. Once home, he was refusing to eat and was becoming lethargic and dehydrated. As a result, he was admitted again through the emergency room to ensure he was hydrated and able to keep down food. He was used to eating solid food and he was too young to understand why he could not have his macaroni and cheese. He refused to drink the protein shakes and we ended up staying a few more days. The hospital has wagons for the families to use. These can be used for children who are able to leave their rooms. They can ride around the hospital and the floor to get out of the room and to boost morale. We walked around the entire floor many times with him in the wagon. My mom was pulling him and pretending to run out of gas. The protein shakes were the gas that he needed to start racing again in his "racecar." Believe it or not, it worked. The last day we were there, the doctor allowed him to try tome mac and cheese. He ate that and we were able to go home.
The nasal stents were the hardest part of recovery. They had to stay in his nose in order to ensure the nostrils would maintain the shape they needed during the healing process. The stents mixed with swelling, boogers, and some dried blood, breathing through his nose was difficult. They really irritated him. The no nos were something that were very important now, because he would continually try to pull them out. Luckily we did not need to have them in too much longer. The follow up was a few days later and they took the stents out.
Prior to our stay for this surgery, I decided that I wanted to give back to our community and to start instilling giving back to others with my son. The hospital did so much for our family that I wanted to give back. The Children's Life Department was full of wonderful therapists and individuals who created events that were memorable for the patients in the hospital. They volunteered their time to walk around and read to the children, to play with them to pass time, to talk to the parents if they need someone, to bring coffee to the parents who need it, and to provide items for the children to play with in their rooms. We raised money for a book and plush set for children in the hospital. We raised enough money for around 40-50 sets. We hand wrote messages to the children in each of the books. We delivered them during our hospital stay. This would be the first of many drives and fundraisers through the years that I have led or helped with for our hospital.
My next post will focus on his 6th surgery- his second set of tubes.
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