Pray for Dom, who is in a coma-Update 6/19/2017 -Post 498-page 25

Discussion in 'Community Board' started by TeresaNJ, Apr 1, 2016.

  1. gemini2727

    gemini2727 DIS Veteran

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    Just saw your updates Teresa, hugs to you.
    I actually worked as a hired visitor to two elderly women in a nursing home when I was in college. They had no family near-by, but their loved ones wanted them to have company during the day. I would read to them, trim their nails, play music for them etc. It was so helpful to them, and an invaluable experience for me.
    I know my daughter (who is studying to be an OT) would love the experience of volunteering her time for someone like Dom. I wish we were closer...
     
  2. TeresaBelle

    TeresaBelle <font color=magenta>Still sleeps with a security b

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    Still thinking of and praying for your family and Dom. I hope all is well. :hug:
     
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  4. NFLDERS

    NFLDERS Ontario, Canada

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    May we write, send cards, or post cards?
     
  5. flyingdumbo127

    flyingdumbo127 DIS Veteran

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    Love that idea, NFLDERS! Thank you and God Bless you for asking :) May we, Teresa?
     
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  6. TeresaNJ

    TeresaNJ Full time stay at home crafter!

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    Hello DIS friends! Popping in for a quick update. Not too much has changed over the last month. My husband & I went to visit Dom last night. We haven't seen him for a few weeks since I had a very long lasting cold/cough, and didn't want to take a chance of spreading it to him. We really missed him! Dom is still at Elmwood Hills in Blackwood, NJ, and his mom is still fighting to keep him there in the sub-acute therapy unit. She is currently waiting for the results of a Fair Hearing, where Dom's lawyer advocate will present to a judge why Dom should continue to receive sub-acute rehab therapy, and Dom's insurance company's lawyer will present why they feel he is no longer a sub-acute therapy candidate at this time, and should be moved to long term care. The hearing was scheduled to be held in Woodbury, NJ this week, but the lawyers asked for a change of venue to Trenton, NJ, so that the location is more of a central location for all testifying. I haven't heard from Dom's mom when the new date for the hearing is.

    Healthwise, Dom is doing well. He had an appointment with a neurologist a few weeks ago, and had an MRI of his brain, as well as an EEG which showed no seizure activity at all. Per the neurologist, there hasn't been a change for better or worse since his last MRI in the fall. Why we would have liked to hear that there was improvement, we were happy to know there hasn't been more damage. Dom was also recently evaluated for tendon release surgery of his lower extremeties. The orthopedic surgeon is holding off on that at this time, but they are going to explore Botox injections of his feet to release some of the increased tone & spasticity of his feet & ankles, which causes deformity.

    While visiting Dom last night, I gave him a haircut & shave, and did some massaging of his hands, feet, knees, elbows & wrists with essential oils. He sure did smell good when I was finished! Dom does what appears to be smiling & laughing intermittently, and was doing it a lot while I was sprucing him up, especially when I was rubbing his feet & knees! Those must be his ticklish spots!

    Please continue to keep Dom in your thoughts & prayers, that he continues to stay healthy, and that his brain continues to heal, and for scientific breakthroughs in the months & years to come, to help those with Dom's type of brain injury.


    Oh my goodness, that is a wonderful idea, and I know Dom's mom, Patty, will be so appreciative! I know she feels like she is alone in this battle at times. Patty does have a lot of support from her church, and they have a prayer group that is visiting Dom daily for 90 days, doing some type of prayer vigil. Here is Dom's address:

    Dominic Christopher
    Elmwood Hills Healthcare Center
    425 Woodbury Turnersville Rd
    Blackwood, NJ 08012
    Unit S2
    Room 217-B

    [​IMG]
    Dominic
    May 19, 2017
    Elmwood Hills Healthcare Center ​
     
  7. macraven

    macraven Proud Redhead Moderator

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    Thank you for keeping us up to date!

    My prayers are continuous for Dom, you, Patty and the family
     
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  8. flyingdumbo127

    flyingdumbo127 DIS Veteran

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    Thank you, thank you Teresa for indeed keeping us updated and providing Dom's address. I think one time you may have shared Dom has limited wall space? I am sending him a package Monday morning that God put into my heart to do. I pray it brings him and you comfort! I totally understand if what is inside needs to be propped up instead of hung. Hugs always and prayers, too. God Bless all of you, my friend.
     
    Last edited: May 21, 2017
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  9. Dan Murphy

    Dan Murphy We are family.

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    Thanks for the update, Teresa.
    I did like reading this. Just seemed light hearted, like 'normal'.

    Keeping Dom in my prayers, Teresa. :hug:'s
     
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  10. low-key

    low-key DIS Veteran

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    Dom sure does have a great family, who dont stop loving him
     
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  11. anniemae

    anniemae Either she is eating a delicious

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    Thanks for the update. Sounds like he continues to do well, and I have no doubt is partially due to his loving family.
     
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  12. flyingdumbo127

    flyingdumbo127 DIS Veteran

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    Thinking of you Teresa and always praying for Dom too :)
     
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  13. 2disneywego

    2disneywego Disney makes me Happy!!!!!!

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    Teresa, Dom is in my thoughts and prayers almost every day. As are you and your DH.
     
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  14. superme80

    superme80 DIS Veteran

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    I feel awful that I missed this. Thank you so much for the update!
     
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  15. Sabeking

    Sabeking DIS Veteran

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    Just saw this Teresa, thank yo so much for sending the address!!! I will write very soon. Praying strength and perseverance for your family and especially Dom!!!
     
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  16. ~AristoCat~

    ~AristoCat~ You must learn your scales and your arpeggios.

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    My prayers and thoughts for Dom and his family and friends.
     
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  17. NFLDERS

    NFLDERS Ontario, Canada

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    I've only this morning read the Update... sigh. I too will keep thoughts, and prayers for Dom, you, and his family on going. Thanks for his address, now I'll be off to send Dom a card. :grouphug:
     
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  18. 2disneywego

    2disneywego Disney makes me Happy!!!!!!

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    Teresa,
    In a small way I have a personal understanding of the situation.

    January 2012, snowstorm, back country roads, black ice, a telephone pole and me. Needless to say, not a great combination. Everyone from the north knows what happens when you hit black ice, zero control of the car.

    Even though I was only going 18 miles an hour, the jaws of life were required to get me out of the car. My car hit the pole off-center so it wrapped around the pole. My head whipped to the left, smashed the side window and then my brain bounced off the inside of my skull, similar to shaken baby syndrome.

    I suffered what's called a high level traumatic brain injury. I have no memory of the 6 weeks after the accident. I had to relearn absolutely everything; walking, talking, eating, reading....everything.

    3 years of therapy, 3-4 appointments a day, 5 days a week plus all types of exercises on my own. And, like all of my life, I didn't fit the "usual injury pattern", which meant the usual therapy didn't work for me. My team of "medical angels" had to come up with an entirely new program of treatment. (So different, I'm written about in the New England Journal of Medicine.)

    I worked my butt off (not literally unfortunately) and amazed my team with what I was able to get back.

    There is permanent brain damage, I'll never be able to work again. My memory is very unreliable, to say the least. I write everything down and have post it notes all over my home to help me remember when and how to do certain everyday things.
    I have a MBA, a total nerd, I loved working with numbers. Now, even with a calculator, numbers make very little sense to me. I have dyscalculia, which is similar to dyslexia, but with numbers. I check everything 10 times at least as I'll see one set of numbers and write down something entirely different.

    I am so lucky though. I'm able to live on my own and take care of my home myself. There are too many things to list that I can't do anymore.

    I focus on what I can do, and am grateful and give thanks for that every day. I still see a psychologist to help me with the anger and frustration with what was taken away. I get angry very quickly which I was always the calm one in the family. I tire quickly, require a lot of rest and can fall asleep in the middle of a sentence. Not narcolepsy, so no danger when I'm driving. Words come very slowly, and incorrect words when I'm tired or my brain is over-stimulated.

    As difficult as it has been for me, I know it's been harder for my family. I'm not and never will be Carolyn pre-accident. It's a daily struggle, but I'm doing it. My family sees this, they are still holding hope for the "old Carolyn" to return and they're frustrated that they can't do anything about it. Family therapy has helped immensely with this for all of it.

    And I know that Dom and I are in entirely different situations, but some of the feelings for the family are the same.

    This is a horrible, frustrating, and sad situation for all of you.
    You are all in my thoughts and in my prayers every day. :cloud9:
     
  19. TeresaNJ

    TeresaNJ Full time stay at home crafter!

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    Hi everyone! Sorry I don't update more often, but there isn't a whole lot new to tell. Dom continues to reside at Elmwood Hills, and I suppose he will be there for the foreseeable future. I was truly hoping Dom's mom, Patty, would see the benefits of moving him to MeadowView where he had been, mainly, because it's a lot easier for all of us to visit more often, but she has dug in her heels as far as continuing to believe he needs to be on the Baclofen pump. If you recall, Baclofen is a medication that helps with increased muscle tone and spasticity, which is a symptom of severe brain damage. I've tried to do research on why this happens to brain injury patients, but I can't really find anything that explains it well. Dom had been getting oral Baclofen, but many brain injury patients have a pump implanted that gives a continuous dose, which in effect, should work better, you would think. MeadowView told Patty they would not accept Dom back there after getting the pump placed, as in their opinion, at some point, most likely sooner than later, insurance would stop paying for sub acute rehab for him, and he'd then be a long term care patient. Long term is paid out differently than sub acute. Facilities in NJ get a daily rate for their long term patients, and everything must come out of that rate, everything. Baclofen pump refills are extremely costly, and have to be refilled every few months, so MeadowView said they couldn't afford it. Frankly I'm surprised Elmwood is still paying for it, but maybe Dom is still considered a sub acute patient for now. I don't know. Patty was insistent, as she said Dom needed the pump to help his legs for when he is able to walk. Unless a miracle happens, Dom is never walking again, let alone stand. He can't even hold his head up on his own. He has no purposeful movement whatsoever. None. He will pull away from pain, and he does have reflexive jerks, etc, but he doesn't do anything consciously.

    We're all trying to stay positive, but it is just so darn hard. What is there to be positive about? I don't know anymore. I'm just questioning everything. Why save him in the first place only to live like this. I know he would hate it. He was dead when they pulled him from the canal, only to resuscitate him to a life like this. First responders know the statistics. They know how long he was submerged, and what that meant. Maybe they resuscitate so that he could have been an organ donor. He would have been a great one. 25 and healthy. I mean, the first thing the ER & trauma physicians told my brother when he got to the ER was that he should pull the plug, as Dom would have no quality of life. Well if that is the case, and they all know this, then why resuscitate at all??? Why resuscitate him to this life of nothingness? I'm so sad. I'm sorry. I don't mean to be so negative. It's just that it's been 15 months, and Dom is not there. He is gone. Dom is gone, his spirit is gone, and it's just his shell remaining.

    I don't know how the fair hearing went, or if they've even had it yet. Patty doesn't tell us anything much anymore. According to her, anyone who doesn't believe Dom is telepathically communicating and sending signals with his eye & mouth movements are the enemy. I mean, she hasn't come right out and said it, but she did write something to that effect in the prayer journal kept at the bedside that the prayer group writes in every day after one of them visit Dom. Patty wrote that the enemy comes in all forms, even doctors with their evil reports. Ugh! WTH is happening? So when the neurologist told her that she would never have a conversation again with Dom, that she'd be lucky if in five years he can even utter one word, that is an evil report. Not truthful, or based on statistics, but evil. She wouldn't tell me what the neurologist said. She told my son instead, after he basically had to pull it out of her. She won't discuss anything that has to do with Dom's diagnosis or prognosis, unless it's something good. I understand she has to keep her spirits up, and her hope alive, but that doesn't mean she has to be delusional. I don't think she can make good medical decisions for Dom anymore with this line of thinking.

    On a good note, Dom did have Botox injections on Friday of his right arm & right & left calf & ankles. Thank goodness. Hoping they help. Patty said the orthopedic surgeon said it takes about five days to see results.So much for the Baclofen pump helping. He was so so tight when we visited him this past Friday that my husband could barely moves his arms when trying to do range of motion & stretching. His arms were pulled all the way up to his chest, and rigid. It makes me want to cry. I don't even know if he's receiving any kind of PT anymore. It doesn't seem like it. They do take extremely good care of him though. He's always clean & spruced up when we see him. That is another one of Patty's obsessions. That Dom look normal and is clean. She always texts us when we go visit Dom, to ask us how he looks, and I told her how tight his arms were, and all she could reply was did he smell good when we got there and was he in the wheelchair. Seriously? As far as my brother, Dom's dad, goes, he & his wife were up to visit from Florida the week before Memorial Day. It had been almost five months since he'd been here visiting Dom. That's all I'm going to say about that. I didn't see him on this trip back here.

    Dom had his 27th birthday on June 4th. His second birthday since the accident. Who would have thought a few years ago that this would be his life? I was on Facebook the other day and pictures from my memories popped up, of a trip we all took to WDW back in 2010. Looking at his smiling face on that trip just tears me up. Thanks for the continued prayers, well wishes, good thoughts, and just listening to me.

    [​IMG]
    Happy times May 2010 Cape May Cafe, my husband, Harry, Dom, and Dom's dad, my brother, Nick.

    [​IMG]
    Italy Pavilion May 2010. Dom, his dad, my husband, and Dom's stepmom.

    [​IMG]
    Dom May 2017 Italy Pavilion Epcot



    [​IMG]
    Dom's 27th birthday, June 4, 2017

    [​IMG]


    [​IMG]
    Dom finally received his custom wheelchair, ordered at least six months ago, in orange & black, Philadelphia Flyers colors, Dom's favorite hockey team.

    [​IMG]
    Me visiting with Dom a few weeks ago.

    [​IMG]
    Thank you so much, Mona, @flyingdumbo127 for the lovely letter and beautiful cross you sent to Dom.
    [​IMG]
     
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  20. TeresaNJ

    TeresaNJ Full time stay at home crafter!

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    Thank you, Carolyn, for taking the time to post this. I'm so sorry for all you went through and are going through, but so happy to hear about all you can do. We have a very good friend who suffered a severe traumatic brain injury around ten years ago, and all of the difficulties you speak of are exactly what he has told us he went through and continues to go through, especially the family issues. He has tried to help us through this terrible time, and has reached out to my brother over and over, but my brother wants nothing to do with him. He & Dom's mom do not want to know or acknowledge the truth. I don't know how long they will continue to live in their alternate reality, but I do know it is taking a toll on the rest of the family, as we can't speak honestly about Dom, and his future, and his needs to them. Hugs.
     
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  21. superme80

    superme80 DIS Veteran

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    :hug: I have no words. I will continue praying. I will also pray for the fractured relationship that has occurred. I know it isn't easy.
     
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