Tuesday, January 11, 2011


todays visit was much better. I get the distinct feeling Danny is testing his limits with me, like telling me to take seatbelts, cervical collar etc off him and I refuse. Today he wanted me to put his glasses on him but I made him do it himself, and he did. He talked alot 2day, questions etc, and there is alot of confusion also tho...which is 2 B expected.
Facebook on January 9 at 8:29pm 

At work til 9. School meeting tomorrow, then down to rehab and over to st lukes with danny for his neuro appt. Hoping to get some new insight into things. 

Give me a call or text tomorrow and let me know how it went!! Praying for good news. Still smiling from yesterday :)

Kathleen Quinn-Farber While we all think it quite humorous, i think Dimetrius was dead serious! Lol
January 10 at 7:33pm

Sunday Danny was more alert. I arrived to find him sitting in the recreation room in his wheelchair, his tube feed running (it took an hour for the feeds to run in by gravity) and an aide was sitting there with him. He was watching a movie on the large screen TV. He was staring intently at it, and I was watching him, trying to be able to tell if he could really understand what he was watching by the expression on his face. This day was the first I could DEFINITELY see his old personality and stubbornness, as well as some sarcasm, shine through. The aide left us to watch TV alone. He held my hand, but didn't speak unless I spoke to him. We kinda just watched the movie together which was actually nice, and just fine with me. At one point a family came in to have lunch with their family member, and set food out all over the table we were at, and a huge bucket of Kentucky Fried Chicken was one of the items. I felt so awful for Danny because he just stared and stared at it, and I worried about him feeling hungry. He was thirsty as well and was only being given drinks by speech therapy to assess his swallowing. I asked him if he wanted to go to his room, but he wanted to finish the movie. About that time the feeding finished. I stood up and unhooked the tube. This got Danny's attention. He asked if I knew what I was doing. I laughed and said "of course." I'd been doing things with his tube, like flushing it, all along, but he never noticed before. Good Shepherd was wonderful about that too I should mention. I am of course a nurse, so they knew I was able...but even for families with no experience, they encouraged learning and participation...after all, you may have to go home continuing such care. The nurse had left the water flush bottle on the counter behind him and I told him I was going to flush his feeding tube with water, and I did. He watched me quizzically as I pinched the tube, placed the water-filled syringe into the end, pushed the water through, repinched and capped the tube and tucked it under is sweatshirt. Then he asked to be pushed. He said, "I don't think you can handle me. You're not strong enough to manage. Lets see if you can do it." I told him I was quite capable and proceeded to push him to his room. In his room I sat in a chair across from him. He asked questions about why he was there and talked confusedly. He put each leg out to the side, alternately, once in a while, but not in the constant way he had been doing previously. The nurse was in and out, and he always said "thank you mam" if she did something for him. It was always "Thank you mam" or "sir" and I found this comical, as did the staff. When we were alone later in the day, he told me several times to unhook the seat belts, but I told him I couldn't do that. He seemed angry about that and demanded more strongly. When I continued refusing he would sigh and make a disgusted face at me. I cleaned his glasses and laid them on his lap. He told me to put them on him, and I told him he could do it himself. Disgusted again, but finally he did it. I sensed him testing me. It was a positive thing though. At one point I turned my back for an instant and he grabbed my bottled tea and began chugging it down!! I could barely get it away from him, but I did...I felt awful doing so though.
Later I was pushing him in the hall (he was beginning to ask to be pushed around quite frequently) and I noticed that he was acutely aware of conversations going on around him. Once when we went past the nurses station, a nurse there was introducing a new doctor to the others, and when we were past them he asked if they were talking about ME...lol. Sometimes he would randomly repeat something he heard someone else say. His confusion was evident by some of what he would say that was totally off the wall, like when he said he wasn't Danny and Danny didn't say something...Dimitrius did. I asked who Dimitrius was and he told me HE was. That was kind of weird, and I wondered if in his mind he was separating his old self from this new foreign person he'd become.
The visit was good though and I felt positive.
Monday they removed his trach, leaving a huge, gaping hole that was much larger than a silver dollar. Because of his tossing, turning and flopping around in his bed, the trach had pushed against all the sides of the stoma causing it to stretch to that size. I couldn't believe it would ever be able to close up and heal. It was covered with a soft dressing and I was told if I press gently on the dressing when he spoke, it would stop the air leakage out and help his words to be more audible. 
At the neuro appt. Tuesday Danny was asked questions to assess his orientation. There really wasn't any. He gave his mom's name when asked who I was, gave his boyhood address as his residence, and didn't know his age. He did know his birthday though. He was sleepy and stared blankly through the appt.
Back at the rehab the seat belt around his chest was removed because he was now holding up his trunk well, and in the hall walking the therapists each had him only around his waist for support. His gait was becoming good, with just a slight hesitation in his left foot...a sort of "dragging" at times.

Taking the van ride with danny to see the neurologist. Dannys trach came out yesterday!
Facebook on January 11 at 12:39pm

 Had a good visit today tho no new info really from dr. Danny can sit up well without lunging forward n can walk with just a bit of support when needed. Taking more liquids too for speech with less "coughing"

The worst part of going to sleep without you, is waking up in the middle of the night and youre not here to snuggle into. I miss you so much. God speed my love to you hunny and i hope you are sleeping soundly and peacefully there, with no pain and restlessness, and that you can feel Gods love and care holding and comforting your fear and confusion. IlyD...