Saturday, December 18, 2010

LETTING NICK IN

Dannys waking more n more, and feeling all his pain worse as well. He was "all over the bed" tonight. He calmed down and fell asleep while i had alone time with him for an hour or so :-)



Danny was opening his eyes more and more and for longer periods on Saturday. He also was moving both his legs back and forth, and his right arm alot, putting it straight up into the air all the time, then letting it fall to his side. And he kept moving his trunk back and forth, back and forth, in the bed.
Nick had been bugging me since the start to let him see Danny, but I wasn't sure if it was the right thing to let him see him like that. I had snapped pix with my phone and took them to Barb's so he could at least see what was going on. In the pictures Danny had the tubes down his throat and all still, and Nick examined them closely, bombarding me with questions about what all the different machines and tubes were for. Now that Danny's face was free of the tubes, and he was waking, I again considered taking Nick in to see him, and decided I would. Danny's sister and mom were against that...not really sure why. They didn't understand the relationship Danny and Nick had for one thing I think, plus they felt it was too traumatic for a child to see...but my heart told me it had to be done for Nick because he wanted to see him. 
When I got Nick to the hospital Friday night, had him wash and gown up and enter the room, I could feel the tension. Nick felt it too. He wanted us to see Danny by ourselves, but others were in the room. Nick is so shy, and I could see him looking at the equipment all over and I sensed him wanting to ask questions and things, but he stood there silently just looking at Danny in the bed. Danny was asleep from his recent medication. We stayed just a short while and left. It hadn't gone the way I'd wanted it to, and I was unhappy...but it was what it was. I promised Nick back at Barb's I would take him back in in the morning when we could visit alone and maybe Danny would be awake to see him, but I couldn't bring him back in Saturday morning cuz he woke up with a cold starting...

All I can say is Danny made my day today! Seeing him movng like that and opening his eyes was the positive reinforcement I needed. Was like an early christmas present!!



Nick got in to see danny last night but he was sleeping from pain meds. Cant take him in today cuz as promised cuz hes starting with a cold this morning. I hope i dont get it or that will keep me away too :-(



Today danny did so many cute things and things seem to be moving along so quickly all the sudden. They even had him outta bed n in a chair today! He really will be ok im sure, and will be coming home eventually. It was awful to leave him tonight. Next 2 days i work 12hrs n cant visit. I love you hunny...so much. You truly are my christmas miracle!

Lorrie L Leickel- Koch WOW!!!!!
December 18, 2010 at 11:02pm 

Robin Kinsey Keppley Great news! I'm so happy for u;)
December 18, 2010 at 11:31pm · 

Amanda Mills Kathy, that is so great to hear.... will still keep him and your family in my thoughts and prayer :) but so happy for you
December 18, 2010 at 11:35pm

Sherry Peletsky Today was amazing!! It was the best day I had in a long time...I am sure you feel the same!
December 18, 2010 at 11:55pm 

Susan Hoffman Fannock Well said........a Christmas Miracle!!!!!
December 19, 2010 at 6:33am 

Judy Peletsky I said he would be our Christmas Miracle .
December 19, 2010 at 8:56am

Thursday, December 16, 2010

FAITH WHEN THINGS ARE DARKEST



Danny opened his eyes! Twice! Once spontaneously and once on command! And he gave his aunt a peace sign when told to. Its nothing short of a miracle! Theres more to this story but im driving to barbs. When i get there ill write a note. There is another miraculous side to this for me. 
Danny opened his eyes...my excitement was just overwhelming beyond belief. I felt such joy, thankfulness, emotion! He opened them when told to, which meant a PURPOSEFUL action! A purposeful action meant he comprehended a command and followed it! It meant he could understand and reason.
By the time I got to the hospital that evening though, Danny didn't look well. He WAS waking up though. His eyes fluttered open half-way for me twice, and he patted and stroked my hand with his right hand, along with moving it just in general. He was doing a sweet "puckering" thing with his lips, and I knew he could understand my words because he showed emotion. This was all so wonderful, however I was quite distressed. 
Danny's infection was back...and worse. He went septic, the MRSA infection through his bloodstream. His fever was very high again and there was a cold water bodycooling machine on him now to keep it down. God, I just wanted to lay over his body in that bed and keep him warm. His shivering was so intense! His blood pressure was so very low that he had to be on medication to keep it from bottoming out, and his heart rate and respirations were extremely high. Perhaps the scariest thing was the appearance of his urine in the catheter drainage bag. The output was very low, and the urine was thick, dark orange/almost tan, and there were huge globs of mucus in it. This meant his kidneys were slowing down. Sepsis will shut down your organs system by system and lead to death if not treated successfully. More heavy-duty antibiotics were hanging now. I wanted so to stay with him that night, but Nick had school in the morning. I was very frightened.
I wrote on my Facebook notes about it, but also about faith. At my job earlier that day I had an experience with faith, and it was faith that needed to carry us through again now. 
With good news always comes bad it seems...
by Kathleen Quinn-Farber on Thursday, December 16, 2010 at 7:32pm
Well, its true! Danny is coming outta the coma. He opened his eyes twice for me today(a little) and did pretty much purposeful movement with his right hand, like reaching for mine and "patting" it, stroking it etc. He puckered his lips 3 times as if to kiss me, and when I told him that everything would be ok, Chris was down several times to see him, and I would try to get Nick in to see him Saturday, a HUGE tear rolled from his eye and down his face. Chest xray today was better again and they are sucking lots... I mean LOADS of gunk from his lungs. The ventilator is now set on spontaneous, which means he is initiating all his own breaths and it just gives him oxygen when he does so. The cerebral moniter is probably coming out tomorrow. Thats the good news.
The bad news is that he is now "septic" which means whatever infections he has, have gone to the bloodstream causing a bodywide infection, and this is life threatening. It is the reason he keeps running high temps, has a high heartrate and respirations, and very low blood pressure. The meds they are giving him for the blood pressure to keep it up are necessary or he would have none. Sepsis can attack your organs and shut them down. This worries me cuz his urine has turned to what looks like orange juice and has dark mucus in it. I'm afraid his kidneys may shut down, a problem he does not need, as well as weaken his heart among other things. They are giving all sorts of antibiotics and doing anything they can. So please dont stop your prayers...they are still needed greatly. I am so greatful for the help and support, prayers, and acts of kindness we are recieving from those around us, esp my wonderful friend Barb, Bayada Nurses and Hope's Collision and towing. The drs and nurses are still sounding confident that he can beat it all.
I wanted to share something that happened last night at work. The baby who I care for's mom, was opening her Christmas cards, and read a touching poem someone had sent her. We were all misty. Then she read something someone else had sent her. It went like this...

When you come to the edge of all the light you know
and are about to step off into the darkness of the unknown,
Faith is knowing one of two things will happen...
There will be something solid to stand on,
or you will be taught to fly......

This had us all in tears, and I started to think about what it really meant and how it applies to this situation we are going through. We really do need to have faith, because this is an unknown land we are walking through and no one knows the outcome. Ive been down a few days...maybe subconsciously coming to a point of trying to just ACCEPT that Danny could be the way he is for months or years. Its not a nice thought, but maybe a part of a sort of grieving process. IDK.
I thought about how much we must just have blind faith, in whatever we believe in, whether it be the traditional God of church, or just a supreme spirit of earth and the universe, kinda like Danny believes, and even I, have come to believe in more so. But one things for absolute sure...we need to have faith in it to bring us through, and as I thought about that I kinda resolved myself to keeping faith even stronger. Within a few minutes later, Danny's cousin Deanne called me with the wonderful news that Danny was opening his eyes and following commands. It felt so surreal and amazing, like an epiphany of some sort, or a spiritual awakening. I know that sounds silly, but Ive been having a few years now of questioning my faith and Gods existance as most people believe him to be. I respect everyones beliefs and have been ashamed at times to admit that i'm unsure of it all. But we all have one maker and powerful all-knowing guiding spirit, and that I never doubted....so it was just a neat experience, and im glad I was able to share it at the twin babies house, with a family who also has had their faith tested, but who never doubted it...(Thanx Mary...your poem and warm hug meant the world to me last night)
So, Im off to leave for home, and will back at the hospital after school tomorrow and Saturday. Then I may not get down til Wed or Thurs again due to work. And Danny would say, "Kath, you gotta keep going. Life goes on" But I dont wanna go on with it without him, and I have faith that I wont have to.....Thankyou all again for your thousands of prayers. I love you all.




Our bed feels the size of a football field.
Facebook on December 17, 2010 at 12:54am


When I called the ICU early next morning, I found out once again what faith can do....

The nurse who had danny overnight said his fever went down without cold packs running, that she was able to wean him off the blood pressure raising meds, that his urine output was ok and its just cloudy with mucus!! Its a miracle! alot of purposeful movement with right hand and moving all 4 extremities!! No eye opening. Praying at least hes getting well. 

Wednesday, December 15, 2010

EMPTY BEDROOM

I am so lost without you danny. But im sleeping, eating, and nick n i are following through with all the things you helped with n taught us. I jus never thought this could hurt so much. Please open ur eyes baby and start your journey back home to us.
Waiting for Drs rounds to finish then calling for an update. Will post here afterwards. Back to work today at 3pm then staying down barbs so i can spend a few hours with danny tomorrow. 
No real changes. Hasnt opened his eyes. Intercranial pressure staying down. Getting a catscan of tummy today-not sure why. Trying to stay positive but am increasingly worried. If he doesnt wake up he now has a feeding tube which can not be pulled. My heart is aching cuz danny would never want to be just sustained like he is. He is so against that. Im sorry for feeling negative. I just need to vent. 
Monday night of the 13th was my first night at home in my own bed in ten days. I tried many times to go upstairs into our bedroom, but I always stopped short at the door and couldn't go in. I know it sounds silly. I text Chris at work and told him about it. He text back "Well mom, you might as well just do it. You have to do it eventually". I did manage it later in the night, more toward morning. I slept a little bit, but not well. It was so hard to lie there in our bed and know Danny was an hour away, lying in that hospital bed fighting for his life.
Tuesday the 14th was the first day that I didn't see Danny at all. That was difficult as well, but at least I could keep in touch with the hospital and the nurses told me to feel free to call as often as I wanted to check on him. 
I returned to work on Wednesday. My client family was anxious to hear about Danny's progress.  

Monday, December 13, 2010

A TRACH and FEEDING TUBE

Wanted to get up early for the hospital. Lol. Couldnt drag my butt outta bed. Off to the hospital for hopefully some good news. Then i have to head home. Lots to do there im sure. 

Dannys getting his trach right now, maybe his feeding tube too. This waiting is unnerving as hell. 
Getting the trach I could accept, although it still made me cringe to think it was really happening. My reaction to the feeding tube was one of confusion about its moral correctness and what it meant for the long term. In my twelve years as a nurse in the convalescent home setting, I was aware of the fact that once a tube is placed for feeding, it often can not be removed in order to let life end. My fear was that if Danny remained in a persisstant vegetative state and never woke up, he would now be doomed until the end of his natural life with being "kept" alive. Danny would never EVER want this. He held such strong beliefs about it. But by the same token, he needed nutrition desperately, and it was either that or a non-permanent naso-gastric feeding tube. Had the choice been mine AT THE TIME, I would have opted for the naso-gastric tube for awhile until there were more signs of him waking. Apparently his mom gave the permission. Luckily it was the correct choice...
9pm. Headin home to Tamaqua shortly after a week here. Barb is the best friend: pseudo-mom/sister anyone could ever have. So much to do in the next 2 days. Im heading over to notes to write an update so come read....

by Kathleen Quinn-Farber on Monday, December 13, 2010 at 9:29pm
   Today Danny got his trach and his feeding tube in his tummy. They also put the cerebral pressure monitor back into his head once again, just to watch things more closely. The fever was mostly staying down but the cold packs are back on cuz he spiked a 104.0 toward morning. His chest xrays show dramatic improvement and the MRSA and pnemonia is getting better. He is scoring an 8 tonight on the glasko coma scale, which is a scale of 3 to 15, but the eyes still being closed concerns the doctors a bit. The surgeons and drs I spoke with today sound optimistic. Dr Hoy said to "get ready" cuz in 2 weeks he will prolly be out of ICU and very agitated, and will need me. So I was told to REST UP! I'm tired and cant think and have a long drive home yet tonight, plus im sure laundry and dishes and who knows what else. So im signing off for now. Thank you all for your prayers...
Its 2am. I cant go into our bedroom. I feel so far away. I have so much to do tomorrow but just feel so lost.
Facebook on December 14, 2010 at 1:58am 


A funny little side-note....
I mentioned Dr. Hoy in my Facebook update. When they were doing things with Danny to prepare for the insertion of the trach and feed tube, I went down to lunch. I sat down cati-corner from a Dr, and he was talking on the phone to a colleague. I heard him say "Yea, I've got a trach in ICU in a bit."  After the procedure when we spoke I told him I was at the table and overheard him, cuz it just seemed so ironic in that large hospital to end up sitting there and hearing that.
Dr. Hoy was one of the few doctors that spoke of recovery with great confidence, instead of trying not to get my hopes up. He explained some brain injury behaviors and stages to me, and warned me of Danny's coming "wild awakening"...lol, and he was right on the money! 

Sunday, December 12, 2010

DIFFUSE AXONAL INJURY

Feeling real down n depressed. Sometimes reading too much info is a mistake. Was readin abt dannys specific type of brain injury, diffuse axonal injury, and the info was discouraging. :-(
Diffuse axonal injury is the shearing/tearing/stretching of the brain's long connecting nerve fibers (axons) which occurs when the brain is injured as it shifts and rotates inside the bony skull. ICP monitoring generally is not useful as they usually have normal ICPs.

Prolonged recovery is the norm - if they recover. This injury has a poor prognosis. If they do recover, there will almost certainly be deficits - personality changes, motor difficulties (poor coordination, paralysis, spasicity, etc), changes in senses, sided neglect, spacial discernment difficulties (limbs in relation to body), aphasia, dysphagia, impaired ADL ability... the list goes on and on. They will forever need day-to-day assistance/care.
Diffuse axonal injury (DAI) is one of the most common and devastating types of traumatic brain injury, meaning that damage occurs over a more widespread area than in focal brain injury. DAI, which refers to extensive lesions in white matter tracts, is one of the major causes of unconsciousness and persistent vegetative state after head trauma. It occurs in about half of all cases of severe head trauma and also occurs in moderate and mild brain injury.
The outcome is frequently coma, with over 90% of patients with severe DAI never regaining consciousness. Those who do wake up often remain significantly impaired. 
Unlike brain trauma that occurs due to direct impact and deformation of the brain, DAI is the result of traumatic shearing forces that occur when the head is rapidly accelerated or decelerated, as may occur in auto accidents, falls, and assaults. It usually results from rotational forces or severe deceleration. Vehicle accidents are the most frequent cause of DAI; it can also occur as the result of child abuse such as in shaken baby syndrome.
The major cause of damage in DAI is the disruption of axons, the neural processes that allow one neuron to communicate with another. Tracts of axons, which appear white due to myelination, are referred to as white matter. Acceleration causes shearing injury, which refers to damage inflicted as tissue slides over other tissue. When the brain is accelerated, parts of differing densities and distances from the axis of rotation slide over one another, stretching axons that traverse junctions between areas of different density, especially at junctions between white and grey matter.

 

Kathryn Marie Thorne We have a friend who's 17y/o daughter suffered a SERIOUS TBI a little over a year ago and is now doing miraculously well having defied all of the 'literature'. Please stay hopeful - there could be a miracle right around the corner!
December 12, 2010 at 9:00pm 

Kathleen Rega Oh,Kath,miracles happen every day and I certainly pray you get one..Keep thinking positive,I know it's hard to do but miracles do happen..Love you..
December 12, 2010 at 9:15pm 

Barbara Ann Mertz Leickel Praying you get a Christmas Miracle. Tis the season for Miracles and you are due one.
December 12, 2010 at 9:29pm

Deanne Peletsky Colna Don't get discouraged .... try to stay as positive as possible. I know the wait and see game is very tiresome, but keeping a positive attitude is one of the first things we can do to help Danny. I am trying to avoid reading any info until he is awake and there is more definitive information to research.
December 12, 2010 at 10:05pm

Amanda Mills Everything happened for a reason, just keep your head on straight! You have way too many people praying for you and your family, stay faithful! God works in his own ways, it may not be as fast as we would like them to be, but we are all here for you! Stay strong, you are an amazing person, with a heart of gold, so keep pushing through! ♥ you
December 12, 2010 at 11:00pm


Reading the above material both then and now as I write this blog compels me to believe in miracles...Danny is a true one!! 

ok, well I started the research so I had to satisfy my thirst for knowledge. I found lots of good info and also emailed Good Shepard for all info they can give for when the time comes, and it WILL come. Right now im jus havin a hard time, imagining Danny places, thinkin abt things he would say, and wishing time could be reversed and we were holding eaother tonight :-(
 

FAMILY TIES

Will be at the hospital by abt 11am. Praying maybe today will be the day he opens his eyes. Will update 
I know with all of the time you are spending at the hospital things will be hard this year, and I know Danny would want Nick to be happy, plus you guys are family now!! It means alot knowing I can call you anytime for updates or just to talk!
December 12, 2010 at 10:24am 

Kathleen Quinn-Farber You sure can! You can count on it. Maybe all of this will have a silver lining in that danny can build back the family relationships he let go of at one time.
December 12, 2010 at 1:10pm 

Judy Peletsky I keep telling my self that will happen I hope I am right .
December 12, 2010 at 7:51pm
As I explained before, Danny kinda drove away most of his family, like his mom and sisters, through behaviors of the past. He didn't see them much at all, but we did go visit occasionally. His other closest family... his aunt, uncle and two cousins Sherry and Deanne he basically just avoided in recent years due to his embarassment about his past drug use and the consequences of it. They never stopped loving him though, and his aunt and uncle were so happy a few months before, when I talked Danny into dropping in on them for a visit. I hoped to help him reestablish his broken family relationships. Well, unfortunately, the accident hurried things along, but if one good thing has come out of it all, it is that Danny has his family back, and they have him back too.
I met Sherry and Deanne for the first time in the ICU, and I liked them right away. And as we saw each other more and spent time every other night or so talking on the phone, I found myself growing very fond of them and them of me. It felt nice, especially since my family is just my mom and kids, to feel a part of something bigger. I always wanted a sister or brother, and I dont even have a cousin in my own state or that I've ever had any sort of relationship with.
Sherry gave me a bag that day with some nice T-shirts and a skateboard in it for Nick, to help me with Christmas. I was very touched. Sherry also met Nick, Chris and Tiffany, his girlfriend, that night, and everyone just seemed good together. I felt happy and lucky to have the people in Danny's extended family accept me, and accept us as a couple without question or judgment...
Sedation and pain med is off unless needed and lungs are getting better. Waiting now to see those eyes open. Its been 9 days.

Saturday, December 11, 2010

MRSA

11am...on my way to the hospital til around dinner time. My son and his gf may come spend the wknd at Barbs. Chris is amazing and has been so supportive and rooting for Danny. It just brings tears to my eyes...

Coma inducing med is off and they are slowly reducing the sedation. Still has pnemonia, mrsa infection, but they are suckin out those lungs and he looks like he may be comin around real slow. Hes still wrapped in cold packs for the fever to stay down.
Throughout Saturday Danny stabilized some. His fever came down, then went up, and kept cycling that way. There were cold packs in bed with him since Friday...around his chest, under his arms, at his thighs. I kept thinking how he disliked being cold. The antibiotics seemed to be working though and they turned off the coma-inducing medication, while also slowly reducing his sedation. It was best to rid of these things as quickly as possible I was told because the longer he was forced to remain comatose the lesser were his chances of coming out of it at all.
The infection he had was MRSA, which is Methicillin-resistant Staphylococcus aureus, and is a pretty serious issue. It is a common problem in hospitals where there are people with open wounds and invasive devices. Vancomycin is the antibiotic of choice to treat it, and Danny was now on that, along with others. He was being suctioned out very frequently, and the coughing spells it caused were intense. Everyone now had to wear gowns when in the room and follow very scrupulous hand-washing technique...which by the way, should have been followed by everyone since the beginning. Its uncomfortable when you are in the medical profession yourself but now on the other side of the fence and things staff and visitors do or do not do correctly become very noticeable.