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!!! 

ON THE GO

Judy Peletsky

You need to get some rest and take a day for Kathy. you need 2 listen 2 this wise old Lady.

January 15 at 1:41am 

Kathleen Quinn-Farber I know i know. I will rest more. Its just that i dont have lots of time to do all the stuff i want to and i want to be there with danny all i can. I know hes working hard to get better but i worry that he doesnt realize from day to day that all of us keep coming. My heart breaks when i think that he feels sad or alone.

January 15 at 8:34am

I went back to bed aunt judy! Lol. So its almost noon. Gonna get us dressed n our things together n head to the rehab. Nicks been askin if we can "go to dinner" so we'll stop in a diner on the way. Ha, i told nick we will be on the move 2day w/danny, walkin n what not.

Facebook on January 15 at 11:50am

3pm. We are at the Queen City Diner. Shouldnt be splurging but ordered steak and ham 4 nick. I let him sleep on the way to allentown and now he is whiney and crabby. Danny would say ignore the behavior. Well its pretty hard but im trying hunny.

Facebook on January 15 at 3:00pm

Something that bothered me a lot during the time Danny was in the hospital, was that Nick was really put onto the back burner in a way. I had little time to spend with him with all my running back and forth to and from the hospital. I did make sure his homework was done and checked it. Shannon usually saw to it that he did the work right after school since I often didn't return home until 8pm, and I appreciated that. Ever since Danny started to work with him on things the previous year, Nick's school work, as well as social behavior improved drastically, and I didn't want to jeopardize that. I knew also though that Danny wouldn't like it if he thought Nick was being in a sense neglected. My friends on the support site, the rehab staff, as well as things I read, assured me that children are resilient and would weather this fine, but I also felt I needed to focus more on him. I tried best I could. He had been asking for us to "go out to eat", like in a real restaurant, so Saturday on the way to the rehab we did. He was overtired however, and quite crabby. He would be more tired by the end of our visit.

Danny was even more active than before, and we took turns pushing him back and forth through the unit. They had removed the seatbelt, and he would keep jumping up out of the chair and walking without warning every few minutes. He would go to the doors, which were locked, and push on them, and ask us to open them and let him out. He held my cell phone like a remote and aimed it at the key-in code pad, trying to open the doors. Sometimes he'd bang on the doors in anger. He begged me to take him to the car so we could leave. He became very emotional, crying at times, but also began to smile alot too. The staff was absolutely charmed by his smile, always commenting on it. We did laps for hours. He was always moving...riding, walking, standing. He was allowed to walk somewhat alone now as long as he was in view of a staff member. He opened closet doors and went into them and opened hampers to look inside. He touched the computers and things the nurses had on their station. He rooted through things in his room and was into everything. It was tiring...I could only imagine how tired he was making himSELF! He would not stay still, even for his feedings, which they were now dumping into the tube all at once. The nurses and I would run alongside him in the hall, one of us steadying the tube, the other trying to pour the formula in! He was constantly saying "I'm sorry mam" and "I don't mean to be this way". He would apologize profusely, sometimes crying. He wasn't allowed food of course, nor drink, and he asked a million times a day for a drink. It was heart breaking to keep telling him he couldn't have anything. Especially when he would say, "I'm so thirsty...just a little sip of water....PLEASE." He had a sense of humor too and could be so funny. We were walking in the cafeteria, and someone had left chocolate cake on a table. Before I could stop him he grabbed it, but instead of popping it into his mouth as I'd expected, he tossed it across the room at Nick!! When Deanne and I were walking in the hall behind him, he pulled down the back of his pants exposing his butt and said he was going to walk past the nurses desk that way. He took off walking fast and we had to run up behind him and fix his drawers! 

That night Harold had to distract him so we could get out the doors to leave. When we crossed the street below we looked up and Danny was waving from the cafeteria window. I could see he was crying and Harold patting his back...

R visit was great! No more seatbelt n allowed 2 walk w/someone watching from nearby. He was real emotional 2day, crying a tad but also spontaneously smiling. Nick n he had a nice time. He's still up,down,walking,sitting,standing non-stop. We gave his bolus feed striding the hall side by side lol! He said he loved us be4 we left n waved from the window when we were outside. 2mrrw gettin there early 2 spend the day :-)

Facebook on January 15 at 8:41pm 

Denise Marie Startzel He looked so good in the pics!

January 15 at 8:43pm · 

Kathleen Quinn-Farber oh he just looks wonderful. He wasnt smiling really at all til today. All the staff were like, "Just LOOK at that smile!!"

January 15 at 8:48pm ·

Judy Mitchell Kathy, Danny's recovery is truly amazing! I said it before ans I will say it again: it was the love and faith of others, but especially YOUR love and faith that brought him this far. Awesome. :-)

January 15 at 9:21pm 

Stacy Derr- Walker ditto Judy! GS and his will to come home have taken him this far. Dont be surprised if he gets released a tad sooner then u may have expected :)

January 15 at 9:32pm ·

Kathleen Quinn-Farber

Good Shepherd is an absolutely amazing place. Every single special person on the staff is so kind and caring and very patient. In 2 1/2wks there he has come so very far! Its like a new surprise and another miracle every time i'm there. He h...as a strong will to come home too. It was breaking my heart tonight, cuz he is still quite confused and out of context, but he kept trying the locked unit doors, trying to break the code on the security keypad, and asking me to please take him to the car so we can leave. No matter how trying some of the issues are that he still has, its so wonderful to see him standing, walking, talking...omg its just too much sometimes!

January 15 at 9:42pm 

Stacy Derr- Walker

I totally get it. Its spine tingling for me to read! Its a true luv story :) How did you end up leaving w/o him trying to get out? It may be a dumb ? but does he talk in a way that you can make sense out of it or is it moreless trying to remind him of things to jar the memory. I know its still not long from the accident but he has come farther now then I ever thought at this time. And still has healing to do but this is simply amazing!

January 15 at 9:50pm 

Liz Leppig Waksmunski That is really good news. I am so happy for you both.

January 15 at 10:01pm 

Kathleen Quinn-Farber

haha...Harold, the male aide that he has quite a repore with, distracted him by telling him they could watch for us to cross the street below when we left from the dining room window. He did wave from the window too, and he was crying I know, cuz I could see Harold puttin his hand on Dannys back and patting it.
He says mostly things that make sense, but its different and hard to explain. Its like very random, out of no where things sometimes. But he is aware of what others around him are saying and things like that, and will often comment on it. He just cant keep still tho and is always saying he is sorry. He remembers some things but not others. Its very fascinating really. I just think now that God had some sort of plan for why this happened.

January 15 at 10:05pm 

Stacy Derr- Walker

Simply amazing! And thanks for sharing your story...its a book in the making :) Im telling ya....you are going to be in for a surprise when he is ready to leave before we alal expected. He wants to get home and has the drive he needs to ...make it happen....and sooner then we think...I think :) Can you stay all day if you like? And can he eat foods or not yet. Didnt know what was up with nurishments. Hang in there Kath...YOUR the wind beneath HIS wings!!!!!!!!!!!!!!!!!!!!!

January 15 at 10:58pm 

Kathleen Quinn-Farber Truly I hope he stays the 4 weeks. I want him to get the maximum he can get with all the therapies. He is getting tube feeds, but is drinking liquids and had applesauce, but they want to do a swallow study because he clears his throat when he swallows so they must make sure the swallow function is working right. He's working on continence issues too.

January 15 at 11:22pm ·

Kathleen Quinn-Farber

oh and yes, I stay all day. Its tiring, what with the constant movement things and all. Before he was walking he would flail in the bed(still does) and is in a netted type bed for safety, but days i was there I would sit right in bed with h...im all day and keep him from climbing out. Its like wrestling a crocodile lol. But I love being there and its so hard to leave. And if he is going to start sobbing when i go that will make it harder. I hope thats just a passing phase.

January 15 at 11:26pm 

Stacy Derr- Walker Give yourself credit....u are always there and involved in his rehab. Thats whats keeping him moving forward. :)

January 15 at 11:28pm · 

Stacy Derr- Walker no passing phase...true luv :) the whole story is amazing. true luv conquers all.

January 15 at 11:30pm 

Kathleen Quinn-Farber I thought I was the only romantic left in the world...lol

January 15 at 11:31pm · 

Judy Peletsky I copied your pictures .Hope it's ok He looks so good can't wait for my foot to heal so I can walk on it ,So I can get down to visit .

January 16 at 9:29am 

Kathleen Quinn-Farber of course you can have the pix!! I hope your foot feels better soon!!

January 16 at 9:47am 

Sarah Hottenstein i'm really happy to hear how much he improves everyday. the lord is amazing and has worked a big miracle with your honey.

January 16 at 12:06pm 

Kathleen Quinn-Farber

Yes it is nothing short of a miracle for sure. But its not just my being there thats helped him. Its his whole family coming together for him. And its the faith and prayers of everyone too. We have got a busy load of work ahead of us. There... will be lots of trips weekly for therapies, dr appts and such, and getting him back on track with his counseling and meds. I cant wait til he is free to come home and i can say come on hunny lets go home, instead of trying to explain each time why he needs to stay while i leave.

January 17 at 12:37am 

John V. Peletsky Kathy, you are truly an amazing person and Danny is beyond lucky to have you, as we are all lucky to have you as part of our family.

January 17 at 5:28am 

Kathleen Quinn-Farber Aww. Thanx john. I feel the same way abt all of you :-)

January 17 at 6:08am 

DAILY STRENGTH

On Saturday at Barb's I found a wonderful support group on the web. It's called dailystrength.org. I joined the brain injury support portion and asked about Danny's constant flailing in bed, and his need to keep walking and standing. I was too busy to get on the site REAL often, but over the past months it has saved my sanity, as a place to vent, share, and learn. I've met a few wonderful friends there. God Bless the Daily Strength Brain Injury Support Group!! 

Has anyone experienced the constant impulse to move???

My bf had his accident dec 4th. He has diffuse axonal injury. The docters said it was the worst kind to have and not to expect alot. He was in a coma 2 weeks. He is now in a rehab and is recovering quickly, walking, talking, tho confused. He isnt eating foods yet. However, he has a need to move CONSTANTLY. It was awful at first and he had 2 ppl doing one to one supervision. He couldnt keep arms and legs from flailing. The involuntary movements when sitting in a chair have stopped. But he just keeps standing up and walking every 2 minutes. He cant help it at all. And as soon as he lies in bed, he rolls from side to side, gets on hands and knees, lies back down, then starts the process over again. It goes on til he finally falls asleep. Has anyone else seen this or had it? I'm worried abt it... Posted on 01/15/11, 11:14 pm

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6 Replies

	Reply #1 - 01/16/11  3:59am  I didn't have the need to constanrly move. Maybe a good thing too as I couldn't due to the bones I broke but I too had to learn how to eat after a coma. It does sound like he is improving all the time, as I did hugely in the first few months after the accident. I know it must be awful for you but just be there for him. Things will calm down. He will keep improving as he is now. It is so early now. i AM 3 years after mine and I am so much better than I was before. I don't remember the intial few months but I have been told some stories. Just be there for him. Things will keep on improving
	Reply #2 - 01/16/11  10:25am  not only is this not one of the bizillion things to potentially worry about, this is a cause to rejoice! his brain is working, big time. the electrical circuitry is firing like mad, fiercely fighting to re-organize itself. movement equals muscle tone, equals strength equals vitality and therefor, health! the one to one supervision is fantastic! sounds like you're in a good place, luckily. civility and our own expectations don't apply, right now. let him be wacky and free of it all, while he's healing. and if possible, change your point of view, and have a little fun with all this absurd strangeness that's pouring out. i was a big fan of saying, 'not all of it, is bad.' my heart near bubbled over with love and laughter many many many times.
	Reply #3 - 01/16/11  10:41am  also, i tried to document as much of the phases my son went, through as possible. i have several fantastic recordings of him just raconteuring about the most imaginative and nutty things that i've ever heard in my life. it was fascinating and fabulous. the reason i bring this up, is, that there seems to be a period of disbelief with the Brain Injured, that any of this actually happened, because they don't remember a thing. the short term memory being very suspect. of course this is much further down the road but it's very very real and part of the emotional acceptance that must occur. good luck and rejoice, your guys is a fighter!
	Reply #4 - 01/16/11  11:52pm  thanx so much "Bitemarks" I really needed to think of this in this way. You are so right. And yes I have been noting all the amazing phases thru this. It is just fascinating beyond belief. I know Danny will one day find it helpful and equally fascinating just because of the inquisitive natured person he is...thanx again!!!
	Reply #5 - 01/20/11  4:31pm  He's lucky to be alive! It will get better, try to be patient. It feels like it takes forever. It's been almost 5 years for me. I was in a coma for 3 weeks. I'm just walking w/ a walker now after everything else, swallowing, talking, memory, etc. I haven't heard about his injury, so all I can say is brains recover amazingly, mine has so much! GOOD LUCK!
	Reply #6 - 01/23/11  10:18pm  just wanted to let you guys know that Danny is now sleeping at night and the tossing and turning crazily has stopped. He still walks and walks ALL DAY LONG, but thats a good thing...except when we have to run beside him trying to put meds and food thru his feeding tube...lol

JUST CALL ME "TIGGER"

Got here at 130 and another surprise after missing just one day-danny is walking well and cant be kept down. He undoes seatbelt, gets up, walks without permission. We are doing laps around the unit for 3hrs now in a wheelchair. Everyone here loves the hell outta him, just cuz of his determined charector and dry humor. I am weepy and i just love him so much. Hes gonna be ok!!

Facebook on January 13 at 4:30pm 

Kriss Mitch yayyy! sending love for both of you!!♥

January 13 at 4:39pm 

Joan Mermon Polk AWWWWW, thats great NEWS!!!!

January 13 at 5:32pm 

Stacy Derr- Walker wonderful!!!! is the memory coming back more?

January 13 at 9:15pm ·

Kathleen Quinn-Farber Yup. Much more alert. Memory comes n goes depending on what is being talked abt and when. One of the aides told me that yesterday while i couldnt be there, danny was saying "kathy just has to get here" and he was asking the aide if he n i are married. So like i said, theres memory in parts. I know one thing. This whole things been a miracle in progress. And im so happy and confidant.

January 13 at 10:00pm

I couldn't get down to the rehab on Wednesday. What a surprise Thursday when I got there! Danny was wheeling himself in the wheelchair with his feet just a little, then undoing the seat belt himself, popping up outta the chair, and taking off walking unassisted and without permission. There was an aide close at his side every moment. His gait was very wobbly and unsafe on his own. They told me this went on all day long. He wouldn't leave the belt on to save his own life. They had tried tucking it under his shirt, wrapping a towel around it, even tape (which I think was an awful thing to try in case of an emergency). I pushed him back and forth on the unit from one door to the other, for HOURS! He would be fine a few minutes, or longer if he was falling asleep...then I'd see him fooling with the belt buckle. Sometimes he would obey when I told him to leave the belt alone, and sometimes he wouldn't. Richie, a respiratory therapist from another floor who came up sometimes to lend a hand with Danny, said Danny was like "Tigger" and must have a spring in his ass!! LOLOL! This need to keep wheeling and walking lasted almost until Danny's last day there.

Our love then, now, always

by Kathleen Quinn-Farber on Friday, January 14, 2011 at 1:18am

i loved u cuz u always told me not 2 worry, get sum sleep, made sure i ate, wore a coat, drove carefully. U were honest, pushed when i needed it. U respected r luv keeping things btwn us private. I was able 2 tell u my deepest feelings, knowing no1 else on earth wud hold my secrets as safe as u. When i was late u worried, paced the floor. Ur luv made me feel safe n cared 4. You listened with ur heart n soul. N u in turn felt safe letting me listen. I still recall the nite u, w/tears streaming, confessed ur luv 4 nick n i. U were a wonderful "dad" 2 nick. i loved watching how u played w/him, encouraged n comforted him n were strong enuf 2 let him dislike ur authority, knowing he was becomming a better child due 2 it n luvin u more cuz u cared that much. Life w/u was never boring. We always had things 2 do, places 2 go, goals 2 work on. Yet even in hours of silent holding, life was rich and my happiness bein next 2 u couldnt be measured.

 Now this event has changed things forever. R lives are altered. The roads been rocky n will remain so in many ways. We face challenges neither u or i ever dreamed. And tho we thought we had struggles b4 w/ourselves n eachother, those things r now dim in comparison. Yet thru it all, i feel our strength as a couple carrying us. Thru those endless hours n days watching u sleep, holding your hand, hoping against hope u could feel me waiting, and the miracle of ur slow awakening, and now ur persistance at overcoming what seemed impossible...thru it all the luv i thought was as strong as it could b, grows deeper each day.

U always found a way, no matter what the problem, 2 resolve it or move us thru it. U never give up or give in. Even now u still talk 2 me w/ur eyes when words wont do. If u raise a brow i kno what it means. R story has been magic. U will prevail and i promise never 2 take ur precious heart n soul 4 granted 4 as long as we live. R love still, n always will, feel like a warm coat on a cold nite. I want us 2 parade thru this life like we r goin 2 a party, cuz thats what we both deserve

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