Rest, Restore, and Rejuvenate: Those three words describe what - TopicsExpress



          

Rest, Restore, and Rejuvenate: Those three words describe what is on Dans agenda for the next week. Since coming home on Friday and over the weekend, Id say that he has done a great job at putting himself on that path. On Friday night he slept for 13 hours! Each day he looks better and seems to have more energy. His appetite has been slow to recover, but by Sunday evening, he seemed to enjoy a favorite meal that I prepared. It has been great to have so many meals provided for us, but yesterday when I made meat loaf, scalloped potatoes, and a chocolate cake, I found it to be cathartic. Actually, the weekend for all of us was quiet and mundane filled with watching basketball and catching up on paper piles! It is interesting how we crave our routines after dealing with unusual circumstances. Prevention is also part of Dans plan. One of the preventative measures for Dan is his newly acquired BiPAP machine. His pulmonologist, Dr. C, and critical care physician, Dr. K, both want him to sleep at night with this machine for a period of time. It is not too invasive in sound, but does irritate his nose and dry up his lips. Over the weekend, we periodically took a pulse ox reading of Dan and his numbers were excellent with ranges form 97-99. Also, in the future when the first signs of a cold appear, it is suggested that he start immediately using his BiPAP. Both doctors discussed the plan to stay healthy and germ free. Dan and I chuckled inside as we know he can not live in a bubble! Every since Dans diagnosis at close to age two, our family has been extra cautious of germs by wiping surfaces, diligent hand washing, and avoiding environments full of bugs. Dan even told Dr. C that everyone at WSU knows him as being germaphobic! I said he should create a sign to attach to his wheelchair warning people to stay away if they are sick. He didnt like my idea! This week we are hoping that his system builds back some immunities. He was prescribed high doses of vitamin C, zinc, and a daily vitamin. But I can only keep him in our bubble for so long! The next plan for Dan is to try to finish off the semester at WSU. Dan has communicated with all 5 of his professors about his desire to complete his course work. All have responded with kindness and tentative plans to work with him. That is Dans goal and as we all know when Dan sets his mind on something, he will do his best to achieve it. So the rest of the week is filled with a few follow-up doctors appointments, rest, catch-up school work, and refueling. I wish I had a great ending, but as I sit here at the kitchen window and look at the bright sunshine, all I can think is how happy we are to have Dan back at home. Im not sure what the full path is ahead for us, only God knows, but I do know that Dan made the best decision last summer to have Dr. Orders place the diaphragm pacing system into his muscles. Even if he is the only patient with SMA to have a diaphragm pacing system, he has now twice proved that it works. Hopefully, the research of one will help others!
Posted on: Mon, 17 Mar 2014 15:29:19 +0000

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