TESTING LIMITS

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. 

Facebook on January 10 at 5:00pm

Sherry Peletsky

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

January 10 at 5:49pm 

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"

Facebook on January 11 at 10:53pm

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...

Facebook on January 12 at 4:26am

REUNION

Todays a snow day 4 nick. He is going 2 make danny a snowball and keep it in the freezer til tomorrow 2 give 2 danny. I cant wait 4 saturday when nick finally gets 2 see danny awake n danny will finally know he is seeing nick n can talk 2 him. My hearts fluttering just thinking abt their reunion!

Facebook on January 7 at 9:24am

Nick said to me tonight that he wishes he had a "health cheat" like on his video game, cuz he would use it to make danny all better again. Aw.

Facebook on January 7 at 6:38pm

Making our snowy way to the rehab hospital so danny n nick can see one another. Today i have major butterflies.

Facebook on January 8 at 10:29am

I was excited for Saturday when I planned on taking Nick in to see Danny with his eyes open, alert and talking. Nick had his frozen snowball for Danny in a baggie and worried all the way to Allentown about it melting. When we got there though, Danny was totally out of it, staring blankly and didn't speak much at all. He was very drowsy, and he wasn't moving his legs as he had been before. His eyebrows raised when he saw Nick and he said "hi Nick"...not the exact reaction I was expecting. We talked to him, but he had no expression and looked solemn. I could feel a veil of depression coming over me. This was becoming a normal thing for me, the up and down feelings. I thankfully knew from my research thus far, that the brain will "shut down" from time to time to go into a re-wiring mode, and so I told myself this was today's situation. We didn't stay long. We headed to Barb's after I snapped a picture of Nick with Danny.

Feelin a tad down. R visit w/Danny went ok, but he seemed out of it n barely spoke 2 us. He maybe had meds b4 R visit cuz the constant moving thing wasnt happenin n he was drowzy, or he may b goin thru the normal healing cycles in which the brain actually kinda "shuts down" 2 allow more "re-wiring". IDK, ive been told 2 expect these mood swing, up n downs, good/not so good moments. 2mrrw morning will b better.

Facebook on January 8 at 4:03pm

GREAT STRIDES!!

Doing homework. Then baths. Then bed. I am utterly exhausted. Early day at the rehab tmrrw then his neurologist appt. He was walking with the assist of 2 in the hallway! Way to go babe. Hope ur new cold goes away.

Facebook on January 4 at 8:08pm

Deanne Peletsky Colna

Visit with Danny tonight was both heart-warming and heart-wrenching .... Bitter sweet. God Bless you for staying by his side what would we do without you! Love Ya

January 5 at 9:29pm ·

Kathleen Quinn-Farber Oh stop it. I love him so much. I dont care if i have to sit by his side every minute. I just feel like i need to be there. I would hope he would do the same for me. I know he would as long as he was strong enough.

January 6 at 12:15am

Tuesday when I walked onto the brain injury unit I was met as soon as I turned the corner, by Danny! He was slumped between two little physical therapist girls, his arms squeezing around their necks and his hands and wrists secured by their hands so he couldn't fall. They were walking swiftly toward me, practically dragging him, and saying loudly, "Step Danny! Move your feet! Walk! Hold your head up!" As they neared me his eyes met mine just for an instant and one eyebrow went up, then he looked ahead of him again. At the end of the hall they told him to turn and the group of three about faced in unison and continued up the hall in the opposite direction. I hurriedly put my coat and things in his room and returned to the hall to watch. It was amazing. They were in fact dragging him while telling him to move his feet, and his stepping forward with each alternating foot was enough to force the strides to occur. They were kinda forceful with him...they didn't baby him. They sat him down and gave him a rest and then started all over again, from one end of the unit to the other in a big "U" shape, reminding him to keep picking his head up.

Wednesday it was all repeated. He was beginning to hold his trunk up just a little because the girls would say, "Come on Danny, hold yourself up! We aren't strong enough to carry you!" His striding was improving, but he was doing this weird thing where all the sudden his right foot would suddenly shoot out behind him and his whole body would try to twist in the direction they had just come from. The therapists were concerned it was some sort of dyskinesea, and I felt it was an extension of the same thing he was doing all the time in the wheelchair with his legs alternately going out over the sides. I asked him that evening if he knew why he was doing this and he said he didn't, nor could he stop himself from doing it. 


On Thursday the first care team update was given to me by care management. Danny had met or exceeded all the goals that were set for him on admission, and I was given a prospective release date of five weeks!! I began to think more about how it would be when he gets home and what things I might need or adaptations would have to be done to the house...

12hrs with danny. Im pretty worn out. Hes doin good walkin w help but i feel has some sort of Dyskinesia thats causing the involuntary movements and interfering w everything he does. The neuro appt is now for tues. He told me he doesnt know why he thrashes and can not control it. Hes so much calmer when im there n i hate leavin himFacebook on January 5 at 10:59pm

 I am butterfly-bellied, full of happiness, anticipation, apprehension. So much 2 plan, think abt, and do. Dannys prospective release may be in 5 more weeks!

Facebook on January 6 at 2:09pm

Finally in bed n pooped. Have begun the process of visualizing where and what i wanna do downstairs to accommodate dannys return home. May need to place a hospital bed downstairs or better yet a pull out bed, for him until he gets ok with the steps up at night and back down in the morning. My wheels are perpetually turning. IlyD!

Facebook on January 7 at 12:00am

GIFT OF GAB!!!

Bought a small cd player for dannys room so he can listen to music, and a large calendar that can help orient him to day, month, season etc. Cant wait to see him again!

Facebook on January 2 at 8:09pm

Tryin 2 catch up missed schoolwork. Homework time isnt the same without you hunny. Your patience n devotion is sorely missed by nick and i.

Facebook on January 2 at 9:57pm

Been awake since 330am. Cant get back 2 sleep. Guess ill just lie here n talk 2 God...

Facebook on January 3 at 4:08am

Danny is talking. I mean up a storm! And he seems pretty with it! Im so excited! It was like a lightbulb turned on!

Facebook on January 3 at 8:37pm

Monday morning I missed PT but I was able to attend and help with occupational therapy. They tried doing several things with Danny. As he sat in the wheelchair in the gym they tried to get him to catch a big ball, but he wouldn't even put out his hands. He slumped and hung his head. They shouted his name and for him to look at them. Nope. The therapist said to me, "He always looks when you call him. Say his name and tell him to look at me." I did so, and he looked straight at me. I told him to look at Janna. This time he made an effort to put his hands out and she kinda tossed/handed him the ball, followed by praise. He was able to hold the ball and when she told him to toss it he let it roll out of his hands. Then she held different color rings up and asked him to pick the color she named. He wouldn't do that, nor even look at them, even when I told him too. She handed him a magazine with female models in it. Surely this I thought would get his attention. Nope. He was exhausted. He was put back to bed and fell asleep.

Later in the early evening Danny's mom and her friend Kevin came to visit. Kevin put his hand out and introduced himself to Danny (it was the first Danny had seen him awake) and Danny reached out and shook his hand. Then I updated Susie his mom on the latest info and went to the cafeteria to give them time to visit. As I was eating I was thinking about a conversation on the phone with Danny's cousin Deanne. She said that Harold told her as well that Danny was talking, and that he told her he and Danny were having "guy talk". She said she didn't want to say Harold was exaggerating, or worse, making it up, but she just found it too much too believe was true. I had told her Harold didn't strike me as someone who would make it up...but she was right...it WAS hard to believe. After all, Danny wasn't speaking to any of us and just watched us.
I went back up to the room and we all sat talking for an hour or so. I sat on the bed with Danny and helped him work the buttons on the remote for the TV. It was difficult for him to navigate his thumb to the button and press, so I pressed on top of his thumb. He sat watching a home improvement program intently, and Susie and Kevin said their goodbyes and left.
Danny was calm. A CNA came in to check his blood sugar, then went out to the doorway, which was about 15 or 20 feet away from the bed, and softly reported it to Danny's nurse. I heard Danny take a kinda deep breath and when I looked at him, he said to me, "My blood sugar is 92." I said "WHAT?" and he repeated it again!! I wish I could remember so much more. I remember hugging him and saying OMG You're talking, and him commenting "well of course" like it was just another day, another word,....I was beside myself. Well, for the next hour he talked on and on. His speech was perfectly clear and ungarbled, but very very soft. I had to ask him to repeat things over and over. He was confused. He said there were ashes all over him and he was going to burn. He asked about Nick and said he had to see him and that he missed him. He said he missed Chris and my granddaughter Sarah, and he asked about Chris' gf Tiffany. He asked questions about the accident. He didn't remember anything about it being a car wreck. I explained no one else was hurt and that he was in a rehab center because he banged up his head pretty bad. I told him he receives speech, physical and occupational therapy. Later he tried sitting up and I asked him where he was going, and he said "Occupational therapy"...lol.
Going home that night I made two wrong turns because I was excitedly talking to Deanne on my cell telling her all about the talking. Harold hadn't been exaggerating at all. Danny just was waiting til he was good and ready to talk...and that was just like Danny :-)

Omg! Its 1am n i cant fall asleep. I feel like a kid on christmas, so thrilled n excited. Danny has alot of memory, i saw alot of his personality shine thru n 4 the 1st time i can truly say i know hell be ok no matter how hard R trials. He said he misses nick n wants 2 C him n i have to get him 2 C him, mayb b4 the wknd sumhow. Im overwhelmed n gr8ful 4 all the prayers weve recieved!

Facebook on January 4, 2011 at 1:10 am

Two to one...and say WHAT????

Good Shep says its 1st time theyve EVER had 2 assign 2 cnas 2 one patient! Now tryin 2 crawl rite outta bed! Med changes 2 try n correct sleep cycle. This AM when large male cna holding him down long enuf 4 nurse 2 get feed in, danny said 2 him, wow man ur strong! HA the guy says. Dude ur pushin ME up off U! Lol

Facebook on January 1 at 7:45pm

When I got there Saturday, New Years Day, Harold was waiting for me excitedly. He told me about Danny's increasing movements as I entered the room. There was another aide at the bedside with him and Harold told her she could go help out on the floor because I was there. The girl looked at him with an unsure expression and he said, "It's ok. Kathy's good with him. We'll be fine" When she left he told me that this was the first time he ever knew of at Good Shepherd that a patient was assigned TWO aides to watch them...two to one supervision. He told me to just wait and see what Danny does now. It was only a few moments until I knew what Harold was talking about. Danny suddenly spun around quickly onto his stomach, got up on his elbows, then hands and knees, and tried crawling right up to the head of the bed before weakening and falling to his belly again. I was flabbergasted! He said, "Didn't I tell you he would do this?" He went on to tell me also, to my amazement, that that morning the nurse was trying to give Danny's feeding, and since he would not lie even remotely still, Harold had to hold Danny down with his hands on his shoulders. Well Danny mustered the strength to push upwards and sit up even with Harold holding him down. When Danny weakened after a moment he said to Harold, "Wow man, you're strong!" My mouth dropped open. "WHAT?" I exclaimed. For sure I had heard him wrong. Danny didn't say a sentence like that. But Harold seemed genuine and I believed him. He said he answered Danny by saying, "I'M strong?? Dude you lifted me straight up in the air!!" Harold went on and on about Danny's strength for awhile. I already knew he was a very powerful guy. I'd seen him lift the back of my car up on the mountain when we got stuck, and loosen an exhaust with his bare hands when a mechanic with tools was having a hard time with it. But I could not get over the fact that Danny spoke the way Harold said he did!!

First night im sleeping in my own bed in 6 days. Spending some time talking to my daughter and making lists of things i gotta take care of. Things have been in such disarray this past month but now i will set on the path to get organized n ready 4 the coming months of changes.

Facebook on January 1 at 10:29pm

Sunday I arrived to find Danny in a veil bed, which was a netted cover on a large frame over the bed. It was fully enclosed and zippered from the outside. Danny was literally crawling to the head of the bed and trying to hang down to exit it by the time I left Saturday night, and he had nearly fallen out twice overnight. Now he was free to toss and turn and climb to his heart's content, but remain safe. He was sleeping now, and sleeping alot during the mornings and days, but awake carrying on all night. They adjusted some meds to help with it, but so far it wasn't working too well.

There is a mesh net over dannys bed now 4 his safety. The med changes so far arent getting him 2 sleep at nite n b awake in daytime. Praying he gets his sleep cycle rite soon so he can start getting optimum benefit from his therapies! So happy his cousins are getting down today to be with him.

Facebook on January 2 at 10:48am 

Mary Jo Donahue-fogarty wait a go! Keep up the good work. now comes the challenging days. Knock em dead in therapy!

January 2 at 11:12am 

Kathleen Quinn-Farber

Thanx mary jo! His fight to succeed is evident esp in physical therapy. To see him standing n stepping was so wonderful yet heartbreaking. Danny is a person whos greatest pride comes from his appearance and posture and how he carries himself. To see him this way makes me proud that he is determined, yet breaks my heart that he is this way n must now struggle jus to get any normal semblance of life back. I just know he will be ok tho. I appreciate ur prayers n support. 

January 2 at 11:32am 

Mary Jo Donahue-fogarty Nothing short of a miracle! You know where to reach me if i can help you out anytime, don't hesitate to call. "we get by with a little help from our friends"

January 2 at 11:38am 

Kathleen Quinn-Farber

Thanx so much. Right now my biggest thing just seems to be balance...of time, priorities, chores. I have been running myself ragged back n forth 2 the hosp. N have become a frequent flyer of drive thrus and such.

NEW YEAR...NEW BEGINNINGS...

 Wonderin if dannys in his PT or OT abt now. Hopin the boys n i can get down 2mrrw 2 assist n encourage his work. His therapists involve family as much as possible which gives him the ultimate chances of reaching his daily n weekly goals.

Facebook on December 31, 2010 at 9:58am

Coming from work tonight at 9, i was in tears n felt an overwhelming need to be with danny when 2011 comes in, so nick n i are heading down. I have to do it cuz we were supposed 2 spend it together n it feels wrong 4 that to change. Then 2 barbs after.

Facebook on December 31, 2010 at 10:09pm

Nick and I drove the hour down to the hospital. I called ahead to let them know we were coming for just a short while to bring in the new year with Danny. When we got there Danny was in a deep sleep. Nick was tired and irritable. The ball drop in Times Square was on the TV in his room. We stood at the bedside and I held his hand, and when the year turned from 2010 into 2011, happy couples were shown sharing their New Years kiss. My eyes were so full of tears I could barely see as I leaned over Danny and kissed his forehead. "Happy New Year hunny" I whispered. "I love you."

I will always remember tonight as a bittersweet start to a new year...an old year of endings, followed by a new beginning. Danny had the face of a sleeping angel tonite: peaceful and looking like nothings wrong on the outside, but inside he is being reborn and starting all over again, learning everything like an infant learns. Im so glad nick n i could hold his hand when this new year rang in. IlyD

Facebook on January 1 at 1:59am

FIRST STEPS

On Thursday morning I was back to rehab early. They decided to stop running continuous feeds an opted for bolus feeds to be given several times per day. This meant the head of the bed didn't need to be up at 45 degrees all the time but could be flat, safer and more comfortable for Danny. The side rails were padded now as well. Danny was tossing and turning even more, turning all the way around in a circle and rolling, getting up on his elbows and trying to bring his knees under him. A feed tube continually attached would have been impossible. I met Harold, a huge, strapping fellow who was Danny's aide that day. He would prove to be one of my best inspirations for hope. He had loads of experience in the medical field and with brain injury patients. He told me ahead of time what phases I might see, physically and mentally, and gave me encouragement. He and I had our hands full for sure. Without a male aide there I don't think I could have controlled Danny myself.

In PT Danny was stood up at the parallel bars over and over. His body slumped and he wouldn't hold his head up. Loudly they would repeat his name and tell him to hold up his head. He would for a few seconds, then it would go down. The periods of standing were only for a few moments. When they would try to back him out in the wheelchair from between the bars, he would grab and hold on to the right bar with his hand and stubbornly refuse to let go. 

In the afternoon session they took him to the bars again and stood him up. That was the goal for now...increased toleration of standing. Suddenly though, his right foot moved forward and he took a step!! I was beside myself and the therapists were praising him. It was difficult for him to move the left foot, so the therapist pushed at his heel with her foot to help it along, and then he stepped again with the right foot. It was amazing to be able to witness his first steps. I felt such love and my heart just swelled with pride knowing he was pushing himself. He was near dozing much of the time and tired easily, but Danny had drive...and where it once was an extreme stubbornness driving his OCD, I suspected somehow that the same overwhelming stubbornness would perhaps be the power that could pull him through this as well.

Danny was rarin 2 go 2day, stood 8x, took sum STEPS w/help!!!!!!! No more continuous feed so head of bed can b flatter n more comfy 4 him-bolus feeds now. Will let trach close soon. Still wiry in bed n gettin on his belly n on elbows, n knees too almost! Thank God for 1 to 1 supervision he's getting. 

Facebook on December 30, 2010 at 5:24pm

awake since 4am with my mind racing. gotta pack up and get to tamaqua to work a 12 today. praying the new year brings good things for everyone. wont see Danny today n maybe not tomorrow, but i saw his fighting spirit yesterday n that gives me hope. I LOVE YOU SWEETHEART!!

Facebook on December 31, 2010 at 6:22am