Day 251 - Procedure Scheduled & Trying to Talk
Tuesday, September 7th, 2021
Mom got back to the room from the ER around 3:30am. James decided to wake up, it's like he knew Mom just came back. He stayed up until 5:30am. Then Mom slept from 5:30am to 7:30am. James was then up for the day...
Mom has been staying every night at the hospital while Dad gets back to work. Dad has been coming to the hospital in the evenings to relieve Mom so she can go home and take a quick shower. He handles trach and G-tube care, does a wipe down bath, changes his outfit, reads books, and plays guitar. Once James gets his melatonin at 9:00pm usually it has kicked in by 9:30pm. Lately it has also been taking his 10:00pm clonidine to get him to sleep.
We finally got the small bowel series scheduled for 9:00am tomorrow, Wednesday. James will be NPO starting at 5:00am. The doctor today also started discussing discharge mainly due to the fact that the Reglan is now out of his system and he is tolerating his feeds, the ventilator, and his weaning of clonidine. Also since James can tolerate a Farrel bag now he is not losing as much gastric drainage as he was when it was originally being dumped into a diaper. That way we don't have to worry about is electrolyte levels being off. Not sure exactly which day you will be discharged but obviously tomorrow we still have the small bowel series as well as labs on Thursday morning. We'll see!
Oh by the way check out the video below of James starting to talk (more like just making sounds). This is the first time James is aware he can make noise. He gets so excited and loves the positive recognition! James is pushing around the trach. Air passes out of the lungs through the trach tube. It does not go through the nose and mouth, and does not pass over the vocal cords to make them vibrate. However James has a little bit of a leak, even though he has a cuffed trach, which is allowing him to make some sounds. Later on once James gets to a lower PEEP we will do a swallow study test and be considered for a Passy Muir Valve. When placed on the hub of the tracheostomy tube, the Passy Muir Valve redirects air flow through the vocal folds, mouth and nose enabling voice and improved communication. For now we will continue to watch Cocomelon and learn some sign language. ✌️👌🤟🤘
James a million dollar little man, you are going to give your parents so much joy.
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