This post details about our son's eighth surgery. Please check out past blog posts to read about his previous surgeries and everything leading up to them.
In 2017, our son's ear tubes fell out and he started to have ear infections again. According to his ENT, he needed another set. In February 2017, we had his second set of tubes put in for Surgery #6. His ear infections stopped and we moved onto a surgery free year! This surgery was right after we moved into our new home. We moved and then surgery two days later!
We went to cleft clinic every year to check his progress with speech, fine motor skills, coping with surgeries and his challenges, and to update the plans for his treatment. We typically went in the summer, because I would have the time off. In July of 2019, we met the new surgeon who was taking the place of our incredible surgeon that we had in the past. We were introduced to him a few years ago, but he was only observing and did not have a final say in surgeries that our surgeon continued to work on. Even though he said he was retiring, he still worked with his current patients for a few more years. In 2019, he finally retired. When we went to cleft clinic we met his new surgeon and discussed his plans for our son's treatment. He did have different repairing methods and did have different procedures for things. We discussed a concern that we had and his SLP (speech therapist) had with him while working in speech for the last few years. She felt he was nasally and his sounds that he made in speech sounded like he was getting a lot of air through his nose. He sounded like he had a stuffy nose at times. She thought he may have a hole in his palate that needed to be repaired because of the large amount of air that she could hear. The doctor said it was because he had a shorter soft palate. The air was escaping from behind the palate where he was missing tissue. He stated that no matter how much he worked in speech and how often he attended speech, he would not be able to correct his speaking without a surgery.
He then stated he had an opening the following Monday for surgery. if he did not do that day, it would be around the time that school started. I did not want to affect his kindergarten year with a surgery. He had a hard year the school year before (we will discuss that in later posts) and he was transitioning to a new school. A surgery during this time would be even more of a challenge and it was not even an option in my mind. So I called my husband and told him what they were thinking. We scheduled the surgery and started to get ready right away. It was a Tuesday by the way. We had less than a week to prepare.
I think this was an advantage, because I did not have a lot of time to stress. I usually had a month or more to worry, stress, and think about the surgery. With only a few days, I did not do that.
What the surgeon planned to do was take some skin from his cheek to reconstruct his soft palate to lengthen the palate and to make the opening smaller. At this point, he was 5 years old and was a good communicator. He also was struggling with his sensory challenges and his ADHD. We had a new surgeon as well, so that would take some getting used to. I knew this surgery would be a huge challenge.
This time he was understanding what was happening to him. He knew the hospital and the doctors there. He had been there for many specialists and testing. We feel like it is our second home. We worked on Social Stories for new experiences. I shared some with him for staying in the hospital, having surgery, and doctors. I am hoping to make my own version in 2021! These helped teach his what was going on and what to expect. When a child with sensory processing difficulties, autism, or ADHD go to an unfamiliar experience or an experience they do not remember, they can become very scared and do not know how to react. It can result in a meltdown and more for the child. This is why I used the few days leading up to surgery to prepare him with what is going to happen, what we are going to do, and who he would be seeing. Obviously many things in a surgery are not guaranteed and people and events may occur without us knowing. You cannot predict everything. This just helps with the basics so they can focus on the items that are not expected.
On his own, he took out our old photo albums and started looking through the pictures of his previous surgeries. I thought this would scare him, but it really helped him. He likes the hospital and the doctors there. He does take time to ease into knowing new doctors or offices, but once he does he is very happy to visit them. He could not remember what it was like in his previous surgeries, so he wanted to do his own research. He said that he felt much better knowing what to expect. Now that he knew what to expect, we had to focus on the sensory stimulation and overload that can happen while in a hospital. We have to think about sounds, tastes, touching, textures, lights, smells, etc. I tried to think of different situations we may encounter and how to prevent a meltdown from that. As I said before, you cannot prevent everything and you cannot predict everything, but by planning ahead, you can reduce the meltdowns. I knew that the no nos would be a horrible texture struggle and he had to wear them. We found leg warmers and put them onto his arms before the no nos. This way he did not feel the no nos on his arms. It worked like a dream! We also ensure that the lights were turned down low, we had him in a quiet room, and we ensured that he had enough time for movement if he was able to move around per the doctor. I brought his pillow and blanket from home and familiar stuffed animals and toys. This helped quite a bit.
We knew that he would need things to keep him busy. Sitting and just watching TV is not his cup of tea. HIs Nana took him out to get some legos and puzzles and books to work on while he was in the hospital. These were great in keeping him busy. Once we were prepped, we headed to the hospital. Unfortunately, my husband was not able to come to the hospital as he had a fever and was sick. The hospital would not let him in so he had to talk to him on video chat and on the phone throughout the time he was at the hospital. Thankfully it was Grandma to the rescue and she was there with us the whole time. We went back into our old routine from the past surgeries and sadly it was like riding a bike. You just know what to do. The emotions and stress though does not get any easier. I honestly think it was harder this time.
We did our typical check in and pre op and everything. We were not the first one of the schedule as he was older than the other children that were having surgery that day. I believe there were complications with the person in front of him so the surgery before him took longer than expected. Waiting was harder to do, but we brought a tablet, games, and coloring books for him to do. The other struggle was that he was not allowed to have his medication for his ADHD before the surgery, so he was struggling with his hyperactivity during this time. This time around was different because we brought our sensory tools and kit with us. We had his weighted puppy, his weighted blanket, his fidgets, headphones, etc. In the past we never needed to bring that with us. I am thankful that we did though!
He watched his TV show on youtube while he waited to be wheeled into the operating room. We had just visited the Georgia Aquarium where we went on a behind the scenes tour. We got to see the animals and the Whale Sharks up close and from the top of the aquarium. He was watching a video on Whale Sharks. Transitions and leaving me has been very hard in the past, but the nurse had something on her cell phone that talked about Whale Sharks. He talked to the nurse about the sharks and everything that he knew about them. He was in deep conversation when they went to the operating room. The transition was a great one. She told him she had a video on her phone from a whale shark and that they would go and look at it. I am so thankful for that transition because I may have lost it if he yelled for me. I am so thankful for the staff at the hospital. They truly are amazing.
We got our beeper and then headed to the waiting room. I worked on planning out my pacing and curriculum for my reading notebook while he was in surgery. I was transitioning to teaching all subjects for that school year and I wanted to ensure that I was planned out for the year in reading and writing so I was could focus on Math and Science that school year. I probably would not have done the entire year if it wasn't for his surgery, but I needed to get something to work on in order to keep my mind busy. Keeping my mind busy keeps me sane. This was a longer surgery, so we were there for several hours. The surgeon said that the surgery was a success, but we would not know how his speech is affected until after he heals again.
When we went back to the PACU, he was waking up and was upset that he had the no nos on. He was not liking how his mouth felt, but soon his pain medicine kicked in and he fell asleep. That night he spit up quite a bit of blood. I think that he had swallowed it during the surgery, but I have to say that it really scared me. I thought something had ripped or torn. I was remembering what had happened during his palate surgery and I started to panic. They paged the surgeon and he said it was in fact blood from the surgery. He had a lot of bleeding, so he had to have swallowed quite a bit.
Later on that night, he started to wake up more. He was drowsy due to the morphine and pain meds that he was on. He realized his mouth was different and seeing him work through that was very interesting. He tried to talk and made some words. I could already hear a difference! I knew the swelling had to go down, but it was very promising!
Throughout our stay we were blessed to have many different people come by from Child Life. We had an older woman who volunteered her time to read to the patients. Since he is a high reader and was obsessed with ocean animals at that time, she went through all of their donations of books and found a book that was about ocean animals that was informational and on his level. Another volunteer came in and offered me a break to go to the bathroom, get a drink, take a walk, etc. We were visited by "Elvis" the weenie dog as well. He was apart of the animal therapy program. We had been visited by another dog during a previous surgery and it was so fun!
Since we were there on the 4th of July and the hospital is right by the Stadium, the Rays Baseball team mascot, Raymond and the wives of the baseball players stopped by with gifts and things to celebrate the holiday. We were also able to stop by the 4th of July carnival in the rec center before leaving. I am so thankful for the child life department there! They make the stay so much easier. This was really fun and it was the first time I saw him smile the entire time.
He was so overwhelmed and uncomfortable that he could not sleep. I ended up crawling in bed with him a few times to help him get to sleep. Then I would get out and sleep in a chair next to him. Some times I fell asleep holding his hand. Some times I could not sleep at all. Seeing your child suffer and not being able to do anything about it is the worst feeling in the world.
By the end of the time, I was exhausted and he was getting really antsy. His ADHD was in full gear and he had not had his medicine in days. I thank goodness that grandma was there to walk him around, keep him busy, and to bring him down to the play room so I could have a break.
He was refusing to drink or eat anything. We tried everything possible, but he just did not want to drink. As a result he become dehydrated. He was not peeing. They would not let him leave until he was drinking enough to show he was not dehydrated. I finally got him to eat some of the protein shakes to get enough liquids in him to go to the restroom. They were putting a lot of fluids in his system, but he still was not going to the bathroom. So when he finally did, it was such a relief- literally!
When we went to get his stitches out at the plastic surgeon, I became very frustrated. The doctor did not understand that he had sensory difficulties and that he had trouble with sitting still. When he went to do the stitch removal, he shined a very bright light in his eye, causing him to meltdown. After he was done he told me that we would talk about another surgery when my son was willing to work with him and be on the same team as him. I am not sure how to feel about this. I miss our old surgeon so much. This surgeon was amazing when it came to his actual surgery work, but his bedside manner was not the best. I have to have a surgeon that is understanding of my son's needs, but I am also needing a surgeon that knows what he is doing. I keep telling myself that our previous plastic surgeon would not have picked him to take over his practice if he did not feel like he would take care of his patients. I am thinking he is adjusting to working with pediatrics. So I am cautiously optimistic. I am also a Mama Bear and will let him know what is what if this happens again. Not all children are the same and they are children.
The hardest part of this surgery was the three week liquid diet! He wanted to have regular food so bad and thought that once he was out of the hospital he would be able to eat his regular food. He refused to drink anymore unless I gave him his pizza or mac and cheese. I thought I would have to bring him back to the hospital for being dehydrated, but he finally started drinking again. When we went to our post op appointment, we were luckily able to start regular foods again. He was happy to have some McDonalds!
Since his surgery he has healed completely and his speech has turned around completely. He had a speech re-evaluation with the SLP at the hospital. He has very little to no air coming out through his palate when he spoke. With his hard work in speech and the surgery, I know he will do so well in his talking!
This is the final surgery post of our blog! He has some others in his future, but we could not get it scheduled due to Covid. Hopefully we can schedule something for 2021. He will need nose reconstruction inside of his nasal cavity for sleep apnea and a third set of tubes.
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