Joseph started 1st grade this year. He was all excited to go. It seemed like he was trying to tell Thomas, John, & I all to leave the room as soon as we walked in. His most exciting thing from the first day was in Science class was they mixed Lemon soda with pixie sticks. He said it was “Sooo Yum.”
So we had our sleep study. It went ok minus the A/C of the hospital went out for roughly 2 hours and John didn’t sleep during that time.
Wednesday we got our sleep study results. Some good news & some ok news. John, my mother, & I met with Dr. Ogborn to discuss the results. John is still having central apnea that is averaging about 1 per hour. He did great while he was on the ventilator. However when they took him off the ventilator and was put on the trach collar. He did not do as well. Dr. Ogborn wants to leave everything the way it is. He said that maybe next year we can try again and see what John does then. So it explains why we see his oxygen levels drop occasionally even while on the vent. John is still having apnea events. Also the one good thing is that we have seen a decrease from when he first had to be trached to now with how many apnea events John is having.
Wednesday we also met with Dr. Ramprashad, GI. Since John has been having some issues with vomiting at night the past 1 1/2 weeks, he decided John will just be one of those kids that need that daily reflux med. So we will be going back to daily nexium vs the every other day like we had been doing the past 3 months. Also we will be adding miralax to John’s daily medicines. Since he has been battling a bit of constipation since we have cut out the night feeds. Also we will be increasing John’s peiriactin that he takes nightly to help increase his appetite from 1/2 tsp to a full tsp. We have the option to do it all at once during the night or doing part in the morning and the rest at the evening.