A Great Weekend with My Brother

Well I got to spend a longer weekend with Dan than I ever have and let me tell you - we had fun! Usually when Dan and I are together it consists of some talking (no, not with his voice) and me trying to convince him to do something fun, but him being too tired so we sit and channel surf.

Well...this weekend was different! Because Dan had such a great week, he is now on a roll! On Saturday his Physical Therapy was at 10:30am - so naturally he was up in his chair, dressed, ready to go with his cuff down by 10:15! The schedule worked out so that he was able to have speech therapy right after and that consisted of him trying different foods (he had several spoonfuls of ice cream and ate a stale Cheetos - I got him a pretzel instead!) Then I asked if he wanted to stay there or go back to his room (usually he is ready to get back in bed at this point) He wanted to walk. So walk we did - for 2 hours! They told me that 10 times around the floor is 1 mile - so I think we went about 2 miles. Great and much needed exercise for Jen! With a record 6+ hours in his chair and his cuff down for about 13 hours, Dan was ready to crash.

Sunday was very much the same - cuff down at 8am, ready to go in his wheelchair for friends from school visiting and more walking. It is so nice for Dan (and for me) to get out of the room; having air blow on you while you're moving is so much better than laying in a bed in a stuffy room. Dan and I also discovered that we like the chair on the fastest speed!
Walking around the floor is nice, just not quite good enough. The Dr. mentioned below came to check on Dan and after chatting, then pausing said, "Have you been outside yet?" Naturally my heart leaped! Sure enough, within half an hour he had arranged for Respiratory to come down with us and Dan got to smell fresh air for the first time in 2 months! We were only out for about 10 minutes because it was chilly and the doctor wanted to watch out for Dan, but I think he could have stayed out much longer! Also, because Dad fully knows how to operate Dans support equipment, the ventilator, lowering the cuff, changing the trach, using the portable suction machine, and knows how to use the mouth vent bag him and mom are able to take Dan out without medical staff with them, which means - Dan will be out a LOT more!

It was such a great weekend, filled with much more hard work by Dan. He is drinking a lot more by mouth and solid foods may be just around the corner. He has started gaining some weight, enjoys being in his wheelchair, has his cuff down all the time, and reminds me that he needs protein shakes or that I or the nurse have to do something that we forgot about!

People LOVE hearing Dan's voice; so many of the nurses and PCT's commented, "whoa! I've never heard your voice before!" One even got teary eyed! Our thoughts exactly!

I am SO proud of Dan and how hard he has worked and how much progress he has made so quickly, especially this past week. We're still working on getting him more comfortable and sleeping more that 4-5 hours at night; but from here on out - things are only looking up! Next step - Dan, what meal are you going to have at the wedding? :-D

Love, Your big sister Jen!