I’m happy to report that all of our nurses are healthy and back in action! It’s a good test for our skills every now and then to be short-handed, but we are quite thankful to have everyone back. This end of summer/beginning of fall weather is messing with little Drake. He even needed some oxygen support on Friday...thankfully, we were able to wean him back off by the end of the day. Any time the humidity goes up, so does the amount of times we have to suction him. Brian went out and purchased a dehumidifier for our living-room, and it seems to be helping. We are starting back at square-one with his trials off of the vent using his HME. We are beginning with 30 minutes as tolerated. While we would love to start back up where were left off (3 hrs twice each day), it’s going to take some time...but we’ll get there again.
Tolerating his AFO’s (leg braces) is another challenge on our plate. He doesn’t love them! However, we don’t need him to love them, we just need him to tolerate them. He seems to be happier wearing his braces if he is not wearing shoes. Once we add the shoes, he gets upset. I think he needs bigger shoes for a more comfortable fit. Tomorrow we will travel to Dallas for an appointment with his neurologist. Our plan is to stop by the Stride-Rite outlet to get some larger/wider shoes.
I’m thankful that we are meeting with his neurologist tomorrow! This will be our first visit since he got his trach. His seizures have become more frequent, longer lasting and more pronounced. The worst part is that his seizures are beginning to scare him. Perhaps his medications need some adjustments or his formula feeds need to be altered. Whatever the problem...putting our daily observations together with his knowledge should give us some direction.
I enjoyed a wonderful 1/2 day spa with one of my dear friends on Saturday! It was a much needed day of relaxation that my father-in-law gave me for a Christmas present! She and I have been telling our husbands that this should probably be an annual thing!
Little Miss Personality soaked up the last days of summer with Mommy & Daddy this weekend! Seeing how excited and comfortable she is on a boat now (as long as mommy & daddy are close) is wonderful! She has come so far since the first days of summer when she was weary of the water. She is definitely a water baby now! I look forward to what next summer will look like...hopefully, Drake will be able to join in on the fun!