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  1. #371
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    Jun 2005
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    Semily, just wanted to say that I'm thinking of you and your family. I hope today has been a better day.
    Loving my DDs and DS

  2. #372
    Join Date
    Jul 2005
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    6,282

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    I feel so bad for your Dad (and the rest of your family) Semily. My grandfather had apraxia after a stroke and my DS was (thankfully) misdiagnosed as having apraxia as a toddler. Not being able to communicate is just such an awful thing and so frustrating for everyone. I hope the therapy he is receiving will help.

  3. #373
    Join Date
    Mar 2006
    Posts
    2,713

    Default Ailing parents support

    Yesterday the discussion began about switching to comfort care only. The oncologist yesterday said she does not think he will make a meaningful recovery, based on his progress so far, and that it doesn't make sense to keep transfusing him with 2 bags of platelets a day. (We apparently are depleting the whole state's supply). She thinks we should look at a timeline to starting comfort care only. The plan was to discuss this with all the doctors (Boston and the neurosurgeon) and come to a decision within 24-48 hours.

    But then the a couple hours later the hospitalist told us we needed to decide right then if we wanted to reinsert his feeding tube (which he's been ripping out), or switch to sugar water, because "we need to start making these decisions". And after that she ordered morphine to sedate him. (!!!) We refused the morphine. We had not been consulted before the nurse was given the orders. Feeding tube plans are up in the air until we have a family meeting with all the staff this morning, which was offered by the floor nurse when I went to ask WTF was going on. My dad is only able to respond to us sometimes, and he has answered both yes and no when asked if he wants the tube.

    My brother and I talked to his Boston doctors and they said they would pursue the stem cell transplant if he makes a meaningful recovery. So Steve and I are trying to determine if there is a possibility of that. And what a "meaningful recovery" means. We have only ever met with his neurosurgeon here, who has not said more than we need to persevere and watch his progress. We are requesting a separate neurologist weigh in and give us a frank assessment. That's what boston recommended we do.

    So, yeah. I explained all this to my dad in the frankest, simplest terms I could last night. He just nodded along vacantly. He became way more alert a little while later, and I asked everything again. He nodded yes to wanting the tube and wanting to fight. We told him we would fight if we determined he could get better. And if we determined he could not get better, we would keep him comfortable until he died. He didn't really respond.

    So the big goal this morning is to find out how likely it is for him to improve neurologically. Are there measures that tell us if a patient can't do X y or z seven days post -op, that he only has xx% chance of improvement?

    He still can't pass the swallow test or stick his tongue out. No words other that occasional no's and one I don't know yesterday. Inconsistent nod answers to questions. Infrequent ability to move his right arm and leg.

    My dad is restless and miserable. He just rolls around in bed and tries to rip out all the stuff. He managed to get out bed a couple mornings ago, ripping out his catheter and nose feeding tube. The feeding tube has come out 2 other times and isn't in right now. But then there are moments of clarity, like a half hour last night when his eyes became his again and we were communicating with nods.

    Eta: he was moved to the PCU on Tuesday afternoon.
    Last edited by semily24; 01-07-2016 at 07:17 AM.

  4. #374
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    Jun 2005
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    I'm sorry. It's just brutal.


    Sent from my iPhone using Tapatalk

  5. #375
    Join Date
    Jul 2005
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    I so sorry Semily. Please know we are all thinking of you and your family as you need to make these impossible decisions.

    Sent from my Nexus 5 using Tapatalk
    Married 8.5.2001
    DS 6.8.2005 DD 10.3.2007 DD 4.22.2011

  6. #376
    Join Date
    Jul 2005
    Location
    VA
    Posts
    3,314

    Default

    I'm so sorry. I'll be thinking of you. I sit in on those family meetings frequently so I can sympathize with all the decisions you are facing.

    Is that Palliative Care team on board yet? Their input can be invaluable in trying to define terms like "meaningful recovery" and "quality of life". Those terms are used (IMO) too frequently in healthcare because the definition of what they mean vary person to person. Especially QOL, which is a very personal definition based on prior lifestyle and personality.

    Virtual hugs to you.
    Married 10/16/04
    "If our thoughts are worth a penny, what are our dreams worth?"

  7. #377
    Join Date
    Jul 2006
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    clearly NOT at the cool kids table
    Posts
    9,766

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    Emily I am so, so sorry. This is the worst of the worst of the worst possible situations. You are an awesome daughter. Big, big hugs.

  8. #378
    Join Date
    Jun 2005
    Location
    Southern California
    Posts
    4,615

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    Semily, I'm so sorry to read the update Continuing to send good thoughts and prayers for strength your way. Take good care.
    S+B Est. 11.09.02
    DS1 06.28.06, DD 07.23.08
    DS2 03.07.12

  9. #379
    Join Date
    Jun 2005
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    13,306

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    semily, I am so sorry the news isn't better or that the situation is not more clear. Thinking of you and your family as you make these difficult decisions.

  10. #380
    Join Date
    Jul 2005
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    7,149

    Default

    I'm sorry, semily. I hope someone there can give you the guidance that helps your family feel confident in the decision-making process.

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