Caleb's video swallow study was moved from Friday to earlier in the week. We went in on Tuesday mid-day to have it done. I brought in several foods and some liquids as requested. Caleb was showing difficulty most often with swallowing liquids, but also showed signs of swallowing solids as well. In a healthy person, when food reaches the back of the tongue, it receives a signal to swallow (Figure 1, left side, below). Caleb doesn't seem to get that signal until the food or drink is already in his throat near the opening of his larynx (Figure 2, left side, below). When he's drinking thin liquids (water, milk, juice, soda, etc.), there is an increased chance of the liquid going into his lungs (aspiration) due to the weakness on his right side.
The difficulty swallowing solids is more that he's not able to totally clear his mouth of food. So, we have been instructed to thicken his liquids to about the consistency of a protein shake or a V8. We were specifically told not to use Thick It because it continues to thicken even after mixed, can change the taste of the liquid and leave a gritty taste behind. We were given some samples of Simply Thick to use instead. Caleb likes it fine. Since we've started using it, he's not having as much trouble with his liquids.
Several times this week, Caleb has awakened with nausea and a headache. We've been able to treat the headache with one dose of Tylenol. He gets 2mg Zofran for the nausea. We discussed this at clinic on Thursday and think it is because he has been sleeping flatter than he has in a while. Dr. Leger still felt confident enough to reduce the steroid again. We are now at 0.5 mg every other day! Caleb also lost 3 pounds this week!!!!!
We did have a rough day today. Caleb woke up with a headache at 4:30 a.m. We gave him some Tylenol & he went back to sleep. We got up about 7:15 and he was quite nauseous. He got his Zofran then. We waited about 30 minutes before attempting to eat anything. However, he was not able to keep it down. He said his head was hurting as well, but I couldn't give him another dose of Tylenol until 8:30. So by the time 8:30 came around, he was hurting pretty bad. I gave him the Lortab at that point. While I was out running errands, Richard took care of the boys. He fed them lunch and Caleb was not able to keep his lunch down either. He didn't even want to attempt dinner tonight. Fortunately, he's still drinking plenty. If he's not able to keep breakfast down in the morning, we'll have to call the clinic.
Good news items:
- We've gotten approval for home health PT, OT & Speech. Company found, just waiting on call from therapist to set up appointment.
- Several times this week, Caleb ASKED to play with Caden or other friends.
- His friend, Stacy, came over on Wednesday and he played for a couple hours with her while I went grocery shopping. (Thanks, Dawn!)
- He's laughing again!!!!
- He's talking more & raging less.
- He is singing again. Caleb always loved to sing.
Team Caleb t-shirts coming soon!!! Thanks again to Staci Salazar for designing this.
Also, more information coming soon about a Team Caleb Fun Walk fundraiser being organized by Richard's coworkers.