Today we started the process toward Mason's new plan of increasing calories in his food and decreasing the diuretics. I believe it was a successful start. Mason needed about 2 to 2.5L of oxygen for most of the day today; back to how he was before he started throwing up late this summer! Bill was even able to turn him down to 0.75L while he was napping today!!! I believe that is the definition of success! Last week when we attempted to decrease the lasix by even a little bit, within about 12 hours, Mason went up from needing 4L to needing 8L -- so much different than today. He is an amazing kid who has me in awe every day!
Tomorrow will see more changes toward our goal depending on what the labs show tomorrow morning. Hopefully, all will hold steady and we can continue to move forward. We still have one big hurdle to jump once we get the lasix down and the calorie count right -- Mason will still need to eventually get back down to his normal dose of steroids. This should happen in about 4 days, I believe, and then, a couple of days later we should have an answer as to whether or not that is successful. With how well he's been doing and how well he tapered down on the steroids this summer, we are hoping for an easy wean.
Once again, though, we'll think about that another day. For today, we celebrate a successful wean of the diuretics.
And, as long as we're celebrating, congratulations to our friend, Joey, for accepting the "resignation" papers from his pulmonologist! It is truly amazing that only a year ago you were fighting for your life and today you are doing so well! Congratulations!!
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Wow - what you guys have to juggle is amazing. You should probably qualify for a medical degree at this point. I'm so glad that hurdle is cleared. You are all three amazing people. Love,Gini
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