YAY! FINALLY, "YES DANNY, YOU CAN HAVE A DRINK!!"

Danny aced his swallow test! What a sight him walking back onto the unit wearing a huge smile n the 2 speech girls giving thumbs up! Nurses clapped n cheered! I of course could barely hide my tears. He can have regular liquids n puree foods! He got a big choc milkshake right away! 

Facebook on January 27 at 4:09pm

Thursday afternoon speech took Danny off the unit once again to attempt the swallow study. He was still having the same trouble sitting still, and I didn't expect the test to be a success. I told him before he left the floor how important it was to try as hard as he possibly could to sit still for the test. A half hour later, here comes Danny walking with the two speech therapists, all three with big smiles on their faces! "HE ACED IT!!" one of the therapists said, waving a fist happily in the air. The nurses and aides clapped their hands and I of course was in tears. It was so emotional for me...such a massive relief after all the weeks denying Danny even sips of water when he felt he was dying of thirst. One of the therapists went straight away and came back with a huge chocolate milkshake for Danny. It was such a pleasure watching him drink it. He sucked it down holding it in one hand, while making calls to more family with the great knews with the other.

Danny got his puree supper tray. What a trip...he was so comical eating n commenting on tastes n doing funny kinda confused things with the items on the tray. The tube feeds are suspended as well! Today was a glorious day. Its possible now that danny may be coming home in abt a week! 

Facebook on January 28 at 12:24am

At supper time his puree food tray came. FINALLY, he could sit in the dining room and eat with everyone, where before I always tried to steer him away from that area at mealtime, pitying him for not being allowed food. Confused, he was a riot to watch eat. He poured juice into his tea, dipped mashed potatoes into his pudding, opened all the packs of condiments. He kept getting up from the table and being funny with all of us. His eating was kind of sloppy, as though he could not judge how much food to put on a spoon at once. All n all it was a day to celebrate, especially since I was told the tube feedings would be stopping now!! His Aunt Judy wrote the following entry on her Facebook the following morning....

Danny

by Judy Peletsky on Friday, January 28, 2011 at 8:20am

Oh what a wonderful visit with Danny at the rehab center .We got to see him have his first drink, a milk shake, and also his first meal since his accident on December 4th. He laughed with us, smiled all day, asked a lot of questions about the accident and wanted to know how I knew the answers to most of them. He wanted me to say a few bad words and when I told him no he said I won't let you get in trouble. He told me he liked my sweatshirt, then in a few hours told me it was ugly, it's not ugly it had a sail boat on the front. When we went to leave he told us no we had to stay, so we did for about another hour then when we did go he needed to know when we would be back, and in a day or two was not a good enough answer he needed to know the day. I love him so much! What a great young man he is.


Kathleen Quinn-Farber I am so glad you and Uncle Jack got to see that wonderful moment when he was told he passed the swallow study and could eat and drink. It was an evening im sure we will never forget!! God I just love him so much and thank God all the time for giving him a second chance at life!!!! Love you

January 31 at 12:41am

 

PERFECTING SKILLS

Danny went up n down practice steps for me, and then 2 flights of stairs today, and did great. He is practicing stepping up and down curbs, and stepping over obstacles. Tomorrow phone calls again, and some organizing in the house. Up to home depot 2 shop 4 railing 4 opposite side of stairway and in the shower. 

Facebook on January 25 at 8:04pm

Despite 7 missed days due to the accident, being upset for danny, and the chaos of the past 7 1/2 wks, nick was once again only 4 points from straight A's! I am so proud of the kid he has become over the past 2yrs. Danny, you really instilled the desire in nick 2 do his best, have a good attitude abt n care abt his education. IlyD! 

Facebook on January 25 at 8:32pm

Oh my, so many phone calls 2 make, forms 2 fill out, n information 2 organize. I need 2 spend the day sorting thru this paper trail n making lists. I can feel my attention deficit disorder most at these times. Danny would say 2 relax, breathe, pay attention, go one step at a time. Im listening hunny, n we will get thru all this together one step at a time. 

Facebook on January 26 at 11:55am

Almost midnight, still up n finishing wash n odds n ends. Still tons 2 do but not tonight. Up to get nick 2 school then down 2 see danny. The nurse told me when i called tonight that he walked less n rested in his bed more! 

Facebook on January 26 at 11:55pm

IMPULSIVITY and ANXIETY

Danny was unable to stay seated on the transport van n so they couldn take him 2 his appt. He was so full of anxiety n a mess. Dont know when they will reschedule. He needs 2 b able 2 sit still 4 a swallow study 2 n not sure he can. Hang tough hun. This too shall pass! 

Facebook on January 24 at 5:17pm

On my way to the rehab. Care manager meeting 2day when she has a few moments. Time 2 start getting solid plans in place. 

Facebook on January 25 at 8:29am

Red tape when it comes to the state n its programs. We are looking@abt 2wks til discharge n danny will need constant supervision 4 sum time. Therapies will be 3x/wk for 4hrs here@good shepherd, plus follow ups here n there. My main worry? How will i take him anywhere w/o him stepping out of the car? Im praying he overcomes the impulsivity hes having n improves his safety awareness. 

Facebook on January 25 at 11:47am

Danny was improved with his ability to stay still much of the time, but being seatbelted into a wheelchair for transport to the bone doctor proved to be a disaster. Wendy, one of the aides was to accompany us on the van. She was a very calm, soothing and patient person. Danny did fine being wheeled out of the facility. Sometimes it was hard to remember that he was so very confused, and I was sorta expecting a happy comment about getting outside when we left the unit. Out front the van awaited, the wheelchair was lifted in, and the driver secured several chain-like straps to various parts of the chair. Then it started. Danny undid his seatbelt and stood up in tears. "Please, I just have to stand for a moment" We allowed him to, since this was common behavior for him all the time...frequent breaks to stand. But each time we redid the belt, off it came again. Danny's anxiousness escalated to the point where he was crying and shaking...begging to be allowed to stand. Then he would apologize profusely and promise to stay seated, only to repeat the process all over again in 30 seconds. Wendy took him off the bus for a break, then brought him on again. Same thing. The driver was telling us he could not move the van or take Danny to the appointment because he was unsafe. We finally took him off and back to the unit. It was very disappointing as we were hoping the bone doctor would remove the brace that day so we could stop battling with Danny all the time about leaving it on.

The need to keep standing was interfering with speech therapy clearing him for drinks and food as well, because they needed to do a swallow study, and Danny would have to sit very still and for a good 15-20 minutes. They had attempted it twice so far and it just wasn't working out. Danny was still begging for drinks and it was so difficult to deal with that.

The care manager met with me to start setting solid plans in place for a discharge to take place in two weeks. She set me up with the therapies that would take place three times a week, and also all initial follow-up doctor appointments were made.

My main worry was Danny's impulsivity and lack of safety awareness. I began to worry about how I would be able to transport him anywhere in a vehicle by myself.

A LOVE POEM...

A Love Poem...

by Kathleen Quinn-Farber 

Monday, January 24, 2011 at 1:17am

I love the way my head comes to the point to softly rest,
on the part of you benieth your neck and lightly on your chest.
I love the way your whiskers tickle gently on my face
and brush with tenderness on every soft and tender place.
I love the way I tremble when you touch me with your hands,
that sweet forbidden passion only lovers understand.
I love the way you smile at me and court me with your eyes
the trust and honesty that makes me know there are no lies
I love to feel your warm breath all across my quivering skin
when I feel the urge to hold you,love you, deeply let you in.
I love our silly jokes and sayings, all our funny words
that help me just by recall when my day's become absurd
I love the most the feeling of your arms encircling me
protecting and reviving now the woman I can be
and when you lay me down so soft, and like a delicate rose
you make me part of you and you of me, from head to toes
I love the feelings that I get whenever you are near
you take away my anger and my bitterness and fear
replacing all that has been broke with something very new
Its why I love all pieces of the thing called me and you.
-Kathleen M. Quinn-Farber

I love and miss you so Danny. I dream of being together again at home...of being close. 
And its so real, 
that when I lie my hand on my tummy,
its your hand that I feel....
when I go to sleep, 
it is your eyes that are closing.  
Facebook on January 24 at 1:48am

I LOVE YOU

Up, nicks off to school, showered n gettin dressed. Another busy day ahead. Team careplan update today. Hoping dannys in better spirits today. I looked it up last night n any cervical fracture at all constitutes a broken neck! Somehow I just never registered this as a "broken neck"...how odd. He needs 2 stop rippin the neck brace off. Its playin w/fire! 3wks till my babe comes home i hope! IlyD 

Facebook on January 20 at 8:55am

Dannys been just the sweetest thing so far today. I got a big hug n "i love u kath"when i arrived,&in the PT gym he came over n asked if i was ok, then put his arms round me n kissed me 3x! This is a guy who doesnt display affection in public. Well i think its glorious! He made my week! 

Facebook on January 20 at 5:08pm

Im tired n ready 4 sleep. Nick has a snow delay 2day. Im still glowing from my visit with danny yest. which was just too sweet 4 words. Please continue 2 pray 4 dannys recovery

Facebook on January 21 at 6:44am


Danny is really getting back to his old self lol. And all the sexual inuendos...so cute. Its 10pm. I called to check on him n he is sound asleep. In fact past 2 nights he hits the bed n goes fast 2 sleep with no more tossing n turning! And tonight he stood quietly to get meds thru his tube. Great accomplishments! 

Facebook on January 22 at 10:26pm 

Danny was hilariously funny early in the day, but as he tires gets agitated, restless, n a tad mouthy. Almost had me in tears a few times. I know its jus a normal phase, but sumtimes its hard 2 B strong day after day. God, I luv him so much. 2mrrw we C bone dr 4 hopefully good news on his neck, n i pray speech therapy allows him 2 drink. Its heartbreaking 2 hear him beg n beg 4 water n hafta keep saying not yet. 

Facebook on January 23 at 10:10pm

 

For whatever reason in Danny's past, whether childhood trauma or family situations...or maybe just chemical make-up, Danny was never one to say "I love you". In almost 2yrs together he had only said it a couple of times. I never cared. I understood, and appreciated that at least he wasn't spitting those words out every half hour like most guys, until it means practically nothing except words to say. He always told me he didn't have to say that...I knew how he felt.

When I walked onto the brain injury unit on Thursday, he burst into tears when he saw me, hugged me so tightly and while sobbing, said "I love you Kathy..." Let me tell you...it meant more at that moment than it could ever have meant at any other time in our lives.

Danny also isn't one for public displays of affection...so imagine my surprise in the physical therapy gym when he stopped in the middle of his exercise, came over to where I was sitting, asked me if I was ok, stood me up, and kissed me passionately three times...in front of everyone. It was beautiful, although I felt kinda corny. Everyone in the room was watching, smiling, and one of the girls even looked about to cry. He made my day...my week, my month. When people suffer a brain injury, one characteristic that seems universal, is that the brain's "filters" are removed. This can include inhibition, judgment, appropriateness. People in the first year, and especially first months of the injury will say or do what they want, when they want to. They really have no conception of how appropriate it is. Feelings and emotions, happiness, anger as well as sexual feelings, are displayed openly.  It became evident that he was entering this phase. He was beginning to say sexual things to me on my visits, and act out in a sexual way, much to my embarrassment, in front of others. He was also becoming angry at times and belligerent, and downright nasty with his comments at times. I being closest, of course received the brunt of it. Following the day of loving words and actions, was a day of him being hurtful and reducing me to tears. I tried to stay strong, but it was hard at times, and so stressful. Thank heaven for the folks on my brain injury support site, who assured me it was all normal and to be expected. He was continually ripping off his neck brace, and lashing out when we would put it back on. He was crying a lot, laughing at inappropriate things, and all over the place with his emotions. And so so confused that it was scary. I called him from home and when they put him on the phone sometimes he would say he missed me, or loved me...other times it was "hi...well I have to go now..."

He finally was put into the shower on Friday, and I was told it was a royal fiasco. He was over sensitive to the cold air, the hot water and the feel of it on his skin. A few days later I got to experience it for myself when I helped with his shower.  He started going to sleep better and the tossing and turning was slowing down. He was able to stand still for longer periods also, which was great when the nurses were trying to give meds and food through the tube. I looked at these things...these changes and phases, even the seemingly hurtful ones, as great strides in his progress.

At home I was swamped with mounds of paperwork to fill out...long applications from different agencies, disability forms...it went on and on. Having ADD myself I am still amazed at how I held it all together in an organized fashion. The thin notebook I was given at the start was replaced by a 3 inch binder that was filling up fast. The notebook went everywhere with me so I had anything I needed...any information required, at my fingertips.  The care plan update meeting again showed Danny was meeting and exceeding the goals given to him. Everyone seemed amazed at his recovery speed. 

http://www.braininjuryguide.org/special/sexualdisinhibition.html

PROGESTERONE STUDY

Progesterone

by Kathleen Quinn-Farber on Wednesday, January 19, 2011 at 5:34pm

within hrs of Dannys accident in the early AM of dec 4th, he was being stablized by the trauma team in icu @st lukes, n cuz of his most severe brain injury, diffuse axonal, which is a tearing and shearing of the neurons n their connectors over the entire brain, was selected 2 participate in a study being done on the healing effects of progesterone on the brain. In animals there has been scientific proof that the introduction of this female hormone as quickly as possible after injury, n continuing 4 several days, seems 2 kinda coat n protect the broken nerve endings until they start 2 repair, when normally those endings actually wither n die. The patients chosen recieve either the hormone or a placebo. We wont know which danny got until after the study ends sometime in the next 2 1/2yrs. I got our 1st monthly follow-up call 2day. Very impressive recovery so far she said. I wonder n suspect he recieved the real hormone, n if he did n it made some of the difference, i am grateful and thank God.

Progesterone Called Option for Brain Injury Treatment By John Gever, Senior Editor, MedPage Today Published: December 22, 2009 Progesterone should be considered as treatment option for head trauma -- and perhaps other types of central nervous system injuries, researchers urged. The hormone's beneficial effects on neuronal survival and functional recovery following traumatic brain injury have been sufficiently documented that its clinical use is now justified, according to Donald G. Stein, PhD, of Emory University, and his recent collaborator there, Iqbal Sayeed, PhD. "There are now about 100 preclinical studies from laboratories in the U.S. and abroad showing the beneficial effects of progesterone treatment in a number of central nervous system injury models," Stein and Sayeed wrote in a "clinical perspective" article appearing in the January 2010 issue of the American Journal of Roentgenology. They also pointed to two clinical trials, one in the U.S. and one in China, showing a that short course of progesterone improved function more than placebo in patients with traumatic brain injury. (See Progesterone Cuts 30-Day Mortality from Traumatic Brain Injury and Progesterone Improves Head Injury Recovery) Stein has been studying the effects of sex hormones on brain function after injury for more than 20 years, primarily in animal models. But he was also an investigator in the U.S. clinical trial, which was led by another Emory colleague, David Wright, MD. In that study, with 100 patients, 30-day mortality following head trauma was cut to 13% with progesterone compared with 30% in a placebo group. The 159-patient Chinese trial found that six-month mortality was reduced by about 40%. In these trials, progesterone was given by injection or infusion over several days following injury. No adverse effects attributable to the hormone treatment were reported. Stein and Sayeed suggested that, given this safety profile and the current lack of effective treatments for severe brain injuries, that it would be appropriate to consider progesterone as a treatment option. "More than 30 years of testing and 30 trials involving 50 compounds failed to identify an acute-stage treatment for traumatic brain injury that could confer neuroprotection and enhance functional outcomes," they asserted. They also pointed out the high frequency of brain injuries suffered by troops in Iraq and Afghanistan. Stroke is also largely untreatable, Stein and Sayeed argued. "Aside from tissue plasminogen activator (tPA), which can be given to only about 3% of stroke victims and only during the first three to four hours after stroke onset, nothing is available for clinical use," they wrote. No clinical trials of progesterone in stroke are planned, they acknowledged, and stroke differs in important ways from traumatic brain injury. Progesterone has shown promise in preclinical stroke models but studies of how it behaves in conjunction with tPA should precede clinical application, the researchers recommended. Stein and Sayeed added that animal studies have found that progesterone may also help in acute spinal cord injury as well as chronic neurodegenerative conditions such as diabetic retinopathy, Niemann-Pick C1 syndrome, and multiple sclerosis. The exact mechanism for progesterone's neuroprotective effects are unknown, but Stein and Sayeed offered an evolutionary hypothesis for why they might exist. They noted that progesterone levels are highest in pregnant women and they remain high throughout gestation. "It is our contention that progesterone's mechanisms of action have evolved primarily to protect the developing fetus against oxidative stress and immune–inflammatory rejection reactions," the researchers wrote, adding that the hormone also helps regulate neuronal development. "Many of the processes of CNS repair recapitulate the steps taking place during development, and this is why we think that progesterone may also show promise in the treatment of traumatic and degenerative disorders of the brain and CNS." They concluded, "Given its relatively high safety profile, its ease of administration, and its low cost and ready availability, this hormone and its metabolites should be considered as a viable treatment option -- especially because, in brain injury, so little else is currently available." Danny went back for a six-month evaluation for this study in early June. All sorts of questions were asked about his recovery so far. I truly think he received the progesterone because his recovery has been dramatically shorter than expected, as well as being significantly complete. The severe memory issues and personality changes, as well as confusion, are the residual effects we are dealing with now...but all in all, Danny is physically ok, except for some tremoring and weakness...his speech is unchanged...and he is doing great. We wont know for 2 more years whether he received the progesterone or the placebo...but i'm convinced he received it :-)

THIS IS WHAT A MIRACLE LOOKS LIKE!!

jumpin in the shower and off to spend the day with Danny. Why does this guy and his many faceted personality, make me feel all funny inside and full of butterflies like a silly school girl??

Facebook on January 16 at 9:52am

 Im exhausted. All day on my feet walking lol. Dannys still on an emotional rollercoaster. I am too. 

Facebook on January 16 at 11:30pm

Made it home n to work on time. Have phone calls to make today, firstly to speech therapy to see if they can approve danny for a liquids order. He cried for a drink all day yesterday and his urine output was very little for me all day yest. Also need to call ppnl, insurance, n maximus 2 check status of our waiver for home health.

Facebook on January 17 at 9:33am

Danny had a rough day today. Is starting to go thru the next normal phase which is anger n agitation...the most difficult 4 families 2 see, understand n accept. I know he must be so frightened waking up in what feels like a different mind n body 2 him. Im headin down early in the morning.

Facebook on January 17 at 10:58pm

Danny has me tired out n aching. Can only imagine how tired HE must be. seems a tad more confused but stayed mostly calm. He told the nurse im his miss america. How sweet is that?

Facebook on January 18 at 4:51pm

Sunday when I got there Harold pulled me aside and told me that it wouldn't be a good idea to let Danny watch me leave from the window anymore. He said Danny cried like a baby for over an hour and was inconsolable :-(

Monday I requested Danny be evaluated again for liquids by speech, but they said he still "coughed" a bit with liquids and so he couldn't be cleared yet. It was getting to all of us in the family...the begging for a drink. He filled a rubber glove at the sink in his room even and tried to drink from it. I was helping him brush his teeth each day and was impressed that he would rinse his mouth with water from the cup afterward and not drink it, but Monday he looked me right in the eye, and down the hatch it went. Poor guy. I didn't blame him. He didn't choke or even clear his throat either.

He was still having crying jags, and more often. I hoped this would pass. It made my heart ache so. He also was getting agitated and angry at times...not real bad, but enough to be upsetting. Where he had been incontinent, he was now making it to the bathroom at least 50-70% of the time, but was easily frustrated when I tried to help him with his hygiene. Other times he apologized profusely to me for me having to help him.   He had dressings and protective pads on his arms and legs from all the moving in bed, which had created rubbed and raw sore places everywhere, especially on his elbows, ankles and knees. He was sleeping just slightly better at night, but while awake tossed and turned and scooted all over. I took to climbing right in bed with him to try to keep him still and situated until he could fall asleep at night. I was so sore...it truly was like wrestling an alligator!

But...

to see him up and standing, walking, talking. He was what a miracle looks like!!!