Down syndrome from a father's perspective.

What to expect when your child with Down syndrome gets a tonsillectomy

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A chapter in our Down syndrome story

Last Wednesday Treyton had his tonsils and adenoids removed as well as tubes put in his ears. This was one of those experiences that is common to both typically developing kids as well as kids with Down syndrome. However, nothing is as easy for a kid with trisomy 21; we knew ahead of time that Treyton would be required to spend the night because of the airway blockage that prompted the surgery and the fact that kids with Down syndrome tend to have a tough time bouncing back after the fact.

I wanted to record my thoughts and feelings as they occurred so I could accurately convey our experience. My hope is that any other parent going through the same experience will find some encouragement in our story. As I reviewed my notes I can see that the anticipation of what was going to happen was much worse than the reality (thankfully). Treyton is my “iron man,” he amazed his mom and me and from what I can tell the nurses and doctor were also impressed as well.

Reason for the procedure

When Treyton had pneumonia the doctors discovered that his oxygen levels were low and likely had been his entire life. We were directed to an ENT so that the specialist could determine the best plan of action for Treyton. The ENT ordered a sleep study that was conducted in May; the results indicated that Treyton’s tonsils were blocking his airways and needed to be removed.

Treyton also developed his first ear infection when he had pneumonia. Even though Trey did not have a lot of ear infections the doctor told us that if he found any water in Trey’s ears when he did the tonsillectomy he would also put tubes in his ears. This is a lot different than how it went with our second daughter. She had tubes put in her ears as well but only after repeated ear infections.

The more I learn about speech and language development the more I realize how important hearing is in this process. Libby Kumin, the author of Early Communication Skills for Children with Down Syndrome, says that 75% of kids with Down syndrome experience hearing loss at some point in their lives and 65 to 80% will experience periodic conductive hearing loss. When a child does not consistently hear sounds it is much more difficult to learn to produce those sounds.  Kumin makes the point that doctors need to aggressive in how they treat hearing issues with kids that have Down syndrome. I am thankful for how our ENT approached Treyton’s ear issues.

Dad’s journal

The day before

As I leave work I start to feel some dread about tomorrow. The thought of Treyton waking up with sharp pains in his throat after having his tonsils removed is not something I am looking forward to. He will not have any idea about what is going on, right now he doesn’t know what is ahead for him.

I think part of the dread I am feeling is the result of his recent hospitalization for Treyton headed to the hospitalpneumonia. I remember putting him in the crib in his room and seeing the terror in his eyes. He was exhausted and wanted to sleep but at the same time the fear gripped him and he looked to me; I cannot forget that look. I stood next to his crib and held him the best I could until he fell asleep and then again and again when we woke up during the night.

 I imagine that one of the key things after Treyton’s surgery is going to be to get him to eat and drink. He is a stubborn cuss and I think that it may be a challenge. The trick is going to be to get him to take that first sip of water, once that goes down I think he will realize the cold feels good to him.

 As a parent you have to do things that you know are in your child’s best interest but will not be easy for them. I am talking about things that are difficult for you to see your child experience. It is times like this that I have to “turn off” my feelings. I have to try to allow myself to become numb. If you did not do this it would be way to difficult. This is one of those times for me. I just pulled in my driveway and I am expecting Treyton to come running to me so I can pick him up. He has no idea – ignorance is bliss.

 13 hours and counting

Treyton had a fun today swimming with his mom and sisters, he loves the water. Because he was having so much fun he missed his nap. He won’t be able to eat anything after midnight tonight so Leigh Ann took him through the drive-thru at McDonalds for a last supper of sorts – fries and chicken nuggets. He fell asleep during that short ride and woke up very crabby. After about an hour of watching Sesame Street he is starting to perk up and eat his food.

Leigh Ann also ran out to the store to get Treyton a new set of pajamas to wear at the hospital. This is usually an out-patient procedure but because he has Down syndrome they want to keep him overnight for observation. Kids with Down syndrome usually have smaller passageways that can make recovery harder.

The morning

I was able to get Treyton out of bed this morning. He was all smiles because I am usually at work so this was something new. He looked so cute in his new pajamas that Leigh Ann and the girls got him last night. We had the car ready to go so I was able to walk him right down to the garage and put him in his car seat.

He was in a great mood for the entire ride to the hospital and now is having a lot of fun in the waiting room. There is a giant wall of water that has air pumped into it so it looks like a wall of bubbles. As soon as Treyton saw the bubble-filled wall dropped everything and went, “Woah!”  Then Trey grabbed Big Bird and Snuffy and pressed them against the wall to show them.

Leigh Ann is feeling like me, she keeps saying she feels sick to her stomach. Like I said earlier, sometimes the only thing you can do as a parent is turn off your feelings because you know it is best for him.

Pre-op

The nurse came into the waiting area to get us. In the next room Treyton stood like a big boy on the scale and then against the wall where they measured his height. Once in the pre-op room, the nurse put Treyton’s ID bracelet on his ankle, he laid their all relaxed like it was no big deal. After a while he started to get hungry and pester us for a snack. Finally the nurse gave him a sedative and he started to relax.

The anesthesiologist had me carry Treyton while he pushed his bed down the hall toward the operating room. Trey was funny. The medicine was starting to really kick in and he was having a hard time holding himself up in my arms. He spotted Leigh Ann walking behind me carrying Big Bird. Trey signed bird to his mom so she gave it to him. With a big smile on his face Treyton grabbed Big Bird from his mom and just about fell backward because of the medicine. When we arrived at the door to the waiting room I had to hand him over to the doctor. That was hard – Leigh Ann and I both hated to see someone walk away with our boy.

Number 4247

The hospital assigned the number 4247 to Treyton so we could track his progress. Next to the number there is a color that indicates the patient’s progress.  Light orange is pre-op, purple is surgery, pink is the first stage after surgery (PACU), and dark orange is post-op. Right now number 4247 is in the pink so Treyton is fighting his way out of the anesthesia. The doctor updated us briefly and said that the he removed the tonsils and the adenoids. He also found some water in his left ear so he put tubes in. I was very thankful for that. He needs to hear clearly in order to learn to speak well.

Leigh Ann just went to grab some lunch for us. We have some time before they will let us see him and once we do I think it may be tough to get a break. I feel some relief right not but in reality the tough part is still ahead for him as well as us.

The road to recovery

We got the word that we could go and see Treyton. I wasn’t sure what to expect but I found a little boy peacefully sleeping with his best friend Big Bird. He looked so good! After about 15 minutes Trey started to stir, he wanted to be held. I was very relieved to see how well the little man was doing.

As we are waiting for Treyton’s room to open up a nurse stopped in to his recovery room to say how cute he was. She said she saw Treyton before she left for lunch and was hoping he would still be there. This encounter really excited Leigh Ann. As a mom, one of her big concerns is that people see and appreciate the person that he is and not the diagnosis. Leigh proudly bragged that Treyton can read over 200 sight words and is able to communicate with sign language.

Side-note

It is hard to hear the term Trisomy 21 so often when people talk about your son. It is necessary for the doctors and nurses to communicate medical information about their patients but Leigh Ann and I are a little sensitive to this. Treyton is only three years-old and we have already seen enough people assume that all kids with Down syndrome are the same. They are not the same!

At times it feels like we are always on the defensive. We do not want to appear this way but the only way to make a long-term impact on how others view people with Down syndrome is to be consistent. So far it looks like Treyton is changing his nurses’ perspectives on his own. We have been told by many of the people that have interacted with him that they cannot believe how well behaved and cooperative he is and how well he is recovering. Way to go Trey!

Room 908

As the nurse and the transport person started rolling Treyton’s bed down the hall he looked around with a concerned look on his face. He wanted to make sure his mom and dad were coming with him. After a couple of turns I think he realized we were coming along with him.

Once settled into his bed Treyton just chilled for a while. He kept asking me to pick him up so I climbed in bed with him and we watched Toy Story 3 together. This was going so much better than I would have imagined. Treyton has amazed me again.

Given that Treyton did not have anything to eat or drink since last night he was thirsty. We gave him his cup and he just held it a second like he was thinking about the next step. He took two quick sips then threw his cup and began to cry. It was so pitiful. A couple of minutes later we repeated the scene because he was still thirsty. Poor kid.

The need to constantly explain to people that Treyton is non-verbal is getting old. Each time there is a shift change in nurses or a new technician comes in we need to go through the entire spiel.

The family

The three girls, Taylor, Lindyn, and Bailey came to visit Treyton at the hospital. They don’t like to see their little brother go through this. This type of thing is difficult for the entire family.  We had to make sure that all three girls had places to go and things to do as well as transportation to things like swimming practice.  During the day both Leigh Ann and I were with Treyton and then only one of us would go home so our normal family life was disrupted.

It was nice to have us all together for a little while today and just hang out in the room for a little bit. We had all been anticipating this day for a long time, now that it was here it was good to just be together for a little bit.  We just needed to be a family for a minute.

D-day plus one

Trey fell asleep fairly early and did a great job sleeping through the night. I slept on the pull-out couch next to Treyton’s bed until he got a little scared during one of the visits from the nurses. Then I crawled in bed with him and slept there for a couple of hours. It is a good thing the beds have sides or I would not have been able to do this.

The ENT, Dr. Taylor, that did the procedure stopped in to check on Treyton at 6:30 AM. Along with the nurses, Dr. Taylor was impressed with how well Treyton did through the night. Trey’s oxygen levels were strong, he did not set off any alarms (pulse, blood pressure, etc.), and he had taken a few drinks as well as a couple of bites of food. Treyton was given permission to go home.

Headed home

Treyton was starving and despite having sores in his throat he wanted his favorite food – french fries. Of course we got them for him, we were feeling so badly for him that we would have gotten him just about anything. Thankfully Trey was given some pain medication shortly before we left the hospital and he was feeling pretty good.

Treyton was glad to be home. His mom and I collapsed into some chairs while his sisters smothered him with love. You could tell when it was time for more medicine because Trey would start to get a little crabby from the pain. You could also tell when the medicine kicked in because Treyton’s activity level would pick back up where it left off. We also had to give him ear drops in each ear because of the tubes they put in. Treyton was not a fan of those.

Tough as nails

It has been four days since Treyton’s tonsillectomy and he is continuing to do well. The kid is amazing. He certainly is proof that kids with Down syndrome can be just as tough as any other kid. Another reason never to under estimate a person with Down syndrome.  This chapter in our Down syndrome story went as well as we could have hoped – actually it went a lot better than we ever thought it would.

We have been told that once Trey got his tonsils out he would be able to sleep and breathe much better so his energy level would increase.  That thought is a little scary.  What we are really hoping and praying is for this surgery to help with his speech development.  I will keep you posted.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.