Fireworks and Feeding Tubes

It has been another busy week at our house. On Monday we celebrated Independence Day (but what American didn’t?)! We were so excited to take Bryce to the parade. We knew he would LOVE listening to the sirens, vehicles and all the little kids enjoying themselves. He was sleeping when we put him in his stroller to walk to the parade and he was still sleeping when we got to our spot. Not to worry though, we knew he would wake up with all the noise. Nope, little stinker decided he was too tired to wake up and slept through the ENTIRE thing (not even the fire truck sirens could wake him up)!

Hanging out with family waiting for the parade

Once the parade was over we decided to quickly walk through the park. Bryce doesn’t handle being out in the heat very well, so we had to hurry just in case he woke up. We stumbled upon a vendor selling tamales, our FAVORITE, or… so we thought. Turns out they really weren’t very good. While we were waiting for our food, Bryce decided it was time to wake up. Usually he gets really upset if he wakes up in his stroller, but thankfully not this time. Not wanting to push our luck (when Bryce gets mad, he gets REALLY MAD), we hurried home.

We spent the rest of the day hanging out inside. We watched a movie then we all took a nap. Justin had to go to work, but was able to get off at 8:30 pm. We went to his brother Troy’s house to enjoy some fireworks. It was Bryce’s first time experiencing them (last year he slept through them all… we’re starting to debate if loud noises put him to sleep rather than wake him up). We had so much fun! Bryce liked listening to his cousins play with sparklers. He even liked sitting on my lap while I held a sparkler for him to watch. However, his favorite part was listening to the fireworks explode! Every time one exploded his eyes got big and he’d turn his head in the direction it came from! It was a great ending to a wonderful day.

Sleeping through the sirens

Now, before I can tell you about the next thing we did I need to give a little background information. About a month ago Bryce had a second swallow study to see how well he was eating. To perform a swallow study Bryce was given food that had liquid barium in it. While he ate, x-rays were taken to see where his food was going. We started by giving Bryce a bottle of juice with the liquid barium. He aspirated on it (the liquid entered his lungs), which made him cough. We tried repositioning but it didn’t help. Again he aspirated. In fact, we learned that almost every time Bryce coughs when drinking means that he aspirates a little (unfortunately, this happens more often than not). I’m not going to lie, it was SO DEPRESSING to learn that Bryce was aspirating on his food. We have fought so hard to avoid this, and for quite a while we were lucky.

Next we tried some applesauce with the barium. Thankfully he didn’t aspirate on it! He did really well with it, but not perfect. Although he didn’t aspirate on the applesauce, he did push some of it into his nasal passages (this is called nasopharyngeal reflux). At least we now know why he sounds so congested when he eats.

Snoozing while we walked through the park

Based on the results of the study, we were referred to a feeding specialist and were able to meet with her on Wednesday. While Bryce and I waited to be called back, he was wide awake and happy to look around. 10 minutes later we were back with the specialist and Bryce decided it was time for a nap. Sometimes he chooses the WORST times to fall asleep. The whole purpose of this appointment was to feed Bryce with the specialist’s help.

Because we couldn’t feed him, she asked about his eating habits. After discussing his feeding history and issues for an hour, Bryce woke up. She was excited to finally see how he handled eating, but I knew we had to wait. Every time Bryce wakes up he has a cluster of seizures (one seizure after another with a short break between). Sometimes it’s only a few seizures, other times he has seizures for an hour or two. We continued discussing feeding options for Bryce while we waited for his seizures to end. 30 minutes later we were able to feed him. We started with a bottle. He did HORRIBLE! He aspirated with each swallow. We had to take his bottle away and move on to purees. I was able to get two spoons of avocado into him before he went back to sleep (little stinker).

He likes the sparkler

Due to everything our specialist read, saw and discussed with me, she recommended Bryce get a feeding tube. Now it is time for Jus and I to decide the next step we should take. We have known since Bryce’s diagnosis that he would eventually need a feeding tube. Is it that time now? What are the pros? What are the cons? Are we ready to take this giant step? We have been discussing this all week. Until we decide, we have been working with Bryce’s dietitian to thicken his liquids to see if he will do better. If not, the feeding tube will happen. I am proud of how hard Bryce works every day to eat. His doctors thought he would be on a feeding tube by six months of age, so making it past a year and a half is a wonderful triumph! 

What was that sound?