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Thread: Update on B

  1. #21
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    Oh my goodness. It's so difficult and so complicated. I'm so happy for your friend that she has YOU, Rose. No one could have a better or a wiser friend. The road ahead will not be easy. But the natural, home way will at least give everyone a little comfort. Your friend has a permanent place in my heart and in my prayers. xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #22
    Distinguished Community Member andromeda31's Avatar
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    Thanks for the update on B...I think about B's Mom & B a lot! It is so hard to make these kinds of decisions. I can totally understand her not wanting to bring B back to the hospital. Glad to hear the vimpat has helped settle the seizures down. Does she have to get that decision to stay at home in writing? Like we have the alternate code status form for Caitlin which spells out our wishes in a legal document...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #23
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL))))))

    Donna ~ Thank you so much for your continued prayers. You are so very right that it is difficult and complicated, more than anything else that we will ever do in our lives. In making this decision, we must rely on faith, instinct, and our intimate knowledge of our children. We have to realize when enough is enough, and then we have to do the most contrary act of nature, letting go of our beloved children.

    For B's mom, the inability of the medical professionals at our hospital to control B's seizures spoke volumes. The manner in which B was shuffled out to the acute care hospital also signaled that B's condition didn't warrant further attention, according to our hospital specialists. "Medicare won't pay for him to stay here," was their excuse, and probably true, but I know docs, who have fudged on Jon's chart to justify him remaining in ICU or Step Down. He's "at risk" for everything. Of course, that may be different the next time Jon is in the hospital. We won't know until that happens.

    After seeking out all of the medical help she could for B, she was left on her own, with no answers, and no guidance or direction. Her best options for B now are our doc, our GI, and our nurses.

    Thanks to her incredible care, B has been healthy and hasn't been hospitalized for 25 years. I find that amazing, since half of our lives have been spent in the hospital. So, I have no doubt that B's mom will carry on providing B with the same superior care, and he will do as well as he can for as long as he can.

    My wisdom is derived from my own experience, and the experiences of others, like you, and all of our CN parents, and B's mom. We help each other. It's who we are and what we do. Just look at the Chasing Rainbows Facebook page for Gavin. The outpouring of support and love for this family is remarkable.

    And many people have helped me on my journey, so I'm just paying it forward. The same way that you are, and all of our CN/BT family are.

    Lisa ~ Thank you so much for keeping B and his mom in your thoughts. It is so strengthening to know that others care and send positive energy. It's what has kept me going all of these years.

    To my knowledge/awareness, B's mom doesn't have a written document about her decision to not take B to the hospital again. I'm not sure whether it is required of her either. When I signed the DNR form for Michael, I was not questioned nor asked for any legal document.

    And when Jon's urologist asked me what I would do, if Jon had prostate cancer, I replied, "I wouldn't put him through chemo or radiation." He was in agreement with me, as he recognized that those would adversely affect Jon's quality of life. Jon is not going to spend the rest of his life in and out of the hospital, suffering the side effects of those treatments. But I was not instructed to provide a legal document stipulating that decision.

    I'm always asked whether Jon has an Advanced Directive, and I reply, "No. We make our decisions as the situation unfolds." We never thought we'd agree to a trache, and yet, Jon has a trache, which saves his life every day, as it's a means of coughing out his secretions/mucous and suctioning.

    If Jon goes into a crisis, we will call the paramedics and go to ER. We'll agree to intubation (vent on the trache). Until we know his situation, we will ask for heroic measures. We feel obligated to give him a fighting chance, since he has demonstrated many times that he is an overcomer and survivor. We will base our decision on the circumstances of his illness, including long term affects.

    Thus far, this has been acceptable to our hospital. But things are clearly changing in the medical world, so I guess I could be in for a surprise one of these days. It would shock me, since we are quite well known there. I'm confident that our lawyer could get an emergency guardian ad litem, if we needed it.

    I have signed reams of forms for both of my boys at that hospital, and no one ever questioned my authority to do so. That is how I would begin my argument. Then, I would take whoever questions my authority to the In Memoriam Wall in front of the 4 North Lobby elevators, and point to Michael's name. We made a financial donation for that inscription. As we will for Jon.

    Meanwhile, my lawyer would be working to get a legal document for me, but in an emergent situation, I believe that our hospital would accept my word as Jon's mother.

    I know that Jon's Medicaid program won't talk to me any more, unless I sign a document that they have yet to send to me. The customer rep on the phone asked to speak to Jon to get his verbal okay for her to discuss his medical needs with me. I was calling to ask for a Podiatrist to come to our home to take care of Jon's infected toe.

    I said to her, "He's a 43 year old man, who has severe developmental disabilities. Do you understand that he isn't able to respond to you over the phone, or at all, probably?"

    It did not matter to her. She just told me she'd send me this mysterious form, which I haven't received yet. And Jon still needs a podiatrist. So, maybe things are changing, such that I will need some legal authority for Jon. A sad commentary on our System.

    I guess I'll find out ...

    Thanks again for keeping B and his mom in your thought and prayers.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #24
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I think I would just worry that if something happened at home to B and she did not call an ambulance or take him to the hospital that they would question why she kept him at home. That is impressive to not be in the hospital for 25 years, I can't even imagine that! :) Today I am just grateful that all my kids went to school (healthy!!) since March 22!! Hope everyone else is having a good day...the sun is shining here and that has much improved my mood...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #25
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    Hi Rose, So many of us deeply appreciate you paying it forward. I'm sure that B's Mom does too. I can see why she feels the way she does. I think if he was younger, there would be questions why she chose to keep him home in a life-threatening situation. But as an adult (as it would be for a senior), the decision is more about what people want and there is a respect for has gone before. I think it's very reasonable for B's Mom to do whatever she thinks is best in the event of an emergency. I just so wish she had more support at home. xox Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  6. #26
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    ((((((Lisa & Donna))))))

    Lisa, I understand your concern, and Donna answered it very well.

    Death is an expected outcome for a person as fragile as B or Jon, as it would be for a senior, especially a senior with a multitude of documented major health issues.

    B's mom explained her decision to B's primary care doc, and he supported her. He would certainly stand behind her, testify on her behalf, and help her in any way, if B passed at home and questions arose.

    But, I don't think that they would. I think that the response by authorities would be that B was medically fragile with uncontrolled seizures, and his death was probable, regardless of intervention.

    And then there is this scenario ...

    B's mom sleeps for a couple of hours, wakes up to check on B, and he has passed. A fear I had for many years as a single mom, until Jim and I began our shifts. Is she questioned and held accountable? Not likely. She can't be awake 24 hours a day, although she does try to be. The medical community and social service agencies recognize that B is medically fragile and at risk. Death is an expected, eventual outcome.

    In our case, the paramedics and firefighters, who have been to our home so many times, would just hug us and tell us that we did the best we could for our sons. They might try to revive him, or take him to the ER to be officially pronounced dead. I don't know the protocol.

    A blood clot can take you instantly. Both B and Jon are at risk for that, as they are immobile essentially. We don't have time for the paramedics to get here, to get Jon to the hospital, to get whatever blood thinner is needed or whatever tests are required to determine if it is a blood clot. He could be gone instantly. My former father-in-law died that way. Here one second, gone the next.

    It's impossible to imagine what might happen or how we'll react when it does. B's mom may call the paramedics, if B begins to fail. That would make sense too. Nothing is carved in stone.

    She rightfully believes that the hospital specialists did nothing to help B, and the acute care hospital made him worse. Who can blame her for not wanting to put him through all of the needles and catheters and prodding and lack of sleep and sweating and ... ?

    B's mom told me that B looked at her, and she knew that he was begging her to stop all that was happening to him in the hospital. And to stop whatever was causing his seizures. She has done that for him to her best ability. And now, she looks forward to returning him to health.

    Most importantly, she is at peace with her decision not to return him to the hospital.

    In 2004, when I was describing Michael's illness and passing to the ortho surgeon, who would put the rod and pins in Jon's right hip, I said, "Some doctors here disagreed with our decision to remove the vent from Michael."

    At the time, this doctor was on rotation as the Chief of Staff, and he gently took my hand and said, "Just because we can, doesn't mean we should."

    I don't really know the legal ramifications for B's mom, or for Jim and me, but I do know that we will make the best and right decision for our sons, based upon our life time of loving and caring for them. And within our community of support, both medically and in social services, I can't imagine that anyone would ever argue that we did not.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #27
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    Rose, I have never met B's Mom, but I know you and I can say with absolutely certainty that anyone who knows you is deeply respectful of the careful and often very difficult decisions that you have made over the years and continue to make. The problem is that our children at home need a lot of support and none of us have had enough. We certainly didn't - if Nick lived at home, we might get a few hours a week. But at his residence, he has one to one 24/7. Someone even comes and sits by Nick's bedside when the night nurse takes her break. How is possible that they could expect parents to carry on when that level of help is needed? I don't know, but they do.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  8. #28
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    ((((((Donna))))))

    Very valid point.

    When we're dealing with daily care needs, respite is a joke.

    And even though Jim is up all night with Jon, I generally wake up after 2-4 hours to check with Jim on how Jon is doing. So, having help really wouldn't do me much good, since I micromanage to the point of being annoying!

    In both B's and our boys' cases, B's mom and we are paid care providers through the IHSS program. We could hire someone to care for Jon during the day using that program, but then we'd have no income, unless we got jobs outside of the home. At our age, we're looking at WalMart Greeter jobs. I refuse to work in a burger joint, as I'm vegetarian.

    Nonetheless, neither B's mom nor I feel comfortable not being with our sons at this point in their lives. It's a choice she and I made in 1985, and we are grateful that we did.

    We also don't have wonderful residences and staff like Nicholas has.

    But we do have a great support system with our home health nurses and doctors. And, in the middle of the night, or on Easter Sunday, if Jon's bed breaks or his mattress fails, we have a reliable service team to rescue us.

    With the trend toward home health care and not hospitalization, we can only hope that appropriate resources/funding will occur to support in home needs.

    In general, I would say that most people we encounter in the medical realm do respect us for our dedication, knowledge, questions and quests for answers, as well as our decisions. In 2011, when I was being quizzed by our favorite pulmo/intensivist as to why I rejected Synthroid for Jon, I began by saying, "I never make any decision capriciously." And he nodded and responded, "I know." By the time I was finished with my dissertation on "Synthroid: Bad for Jon," the doc was agreeing with every word.

    Longevity counts for something, I guess!

    Plus, I'm a very stubborn old broad!

    How is Nick? What's new in your world? Where's your update?!?!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #29
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    Hi Rose! You are right, I think if the docs take the time listen to our reasoning, they always end up agreeing. I'm glad that has been your experience! Nick is doing fine - he still has too many seizures overnight, but we have to give the keppra time to do its work and the last two nights it was better (5 short and small jerks last night). Strangely, though, his heart rate has been low and alarming on his sat monitor. It drops below 50 and goes as low as 46. That is a couple of weeks old and happens virtually every night now. We had that happening in London and I organized a halter monitor to test. Of course, wouldn't you know, that night he didn't have symptoms, but then the symptoms alleviated anyway. Now they're back out of the blue. Anyway, the GP isn't worried and so far, there are no other symptoms that worry us. So we just watch. All is well. How is Jon these days? I think of you all SO often (well, pretty much everyday lol)! xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  10. #30
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    ((((((Donna & Nick))))))

    As always, I'm sorry to hear that Nick is having any kind of seizure. I wonder where that lower heart rate is coming from? How are his SATS at those times?

    How's his wound? I hope that is fully healed now.

    I will pray that Nick stabilizes on the Keppra. Every drug change is like throwing darts in a dark room, with a mask over your eyes. I know.

    Thank you for asking about Jon. He's been coping with excess fluids and fluid retention for the past 3 weeks. Vomiting. Suctioning. Drooling. Gagging.

    It all began after: 1. he got this bed; 2. had his catheter changed; 3. had his trache changed.

    Choose a culprit and win a trip to Kalamazoo.

    Not the best of times for Jon, and I have no clues as to why. I'm feeling mighty frustrated right now.

    Oh, and Medicaid will pay for an ambulance to take Jon to and from a Podiatrist's office, but they will not pay for a Podiatrist to visit Jon at home. Our doc suggested I call the Nurse Practitioner. Well, she's lovely, but she is not a Podiatrist, and both of Jon's home health nurses saw his toe 3 weeks ago and agreed, "It is infected. Get Bactroban. He needs a Podiatrist." I don't need anyone else to tell me that.

    Plus it is a chronic problem, which required a Podiatrist last June, when Jon was in ICU, after his seizure.

    Meanwhile, I bathe his toe in gauze soaked saline and Betadine, air it dry, apply Bactroban, wrap it up, and pray that some Podiatrist in the land will have mercy on Jon and come to our home to deaden the dang-gone nail beds and stop this from recurring!

    I've offered to pay the Podiatrist privately, and I've yet to find one, who will do so. It's all absurd and annoying.

    Jon keeps slipping down in the bed. We have no solution for that. We're still renting this stupid bed, which I can't move. I'm so frustrated!

    Otherwise ... we're fine!

    Prayers on their way for Nick and you and your beautiful family ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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