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Thread: Middle of the night and scared

  1. #1

    Middle of the night and scared

    Dave is feeling very nauseated and is very pale. He did not want his vest percussion treatment and I got him in to bed early. No fever and SP draining fine.
    He went to a charity pancake feed with my Mom, sister and daughter that is able to suction if needed.
    I'm sicker than a dog with this bronchitis, stayed home to rest and don't dare take something for it now. Damn aide schedule mix up when could use the overnite.
    Last night short too.
    Mt main worry is something I have never understood. He has a 7 Bivona trach with inflatable cuff for going on the vent at night.
    If he indeed has to puke should the cuff be up or down? I called ER, looked at Bovina web and seems conflicting answers. He has never had to happen before.
    I worried sick he will aspirate. Things have been going fairly well with good and bad days, but nausea new.
    He finally felt he could stomach his pills with applesauce.
    Times like this I doubt myself. I feel sick with worry and so alone right now.
    I catch myself not breathing.

  2. #2
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    OMG .. maybe you should call an ambulance for you both if you're unsure. Better safe than sorry.

    Those pancakes probably felt like a big hard ball of dough sliding through his motility-challenged system that made him feel ill. I know the feeling whenever I've tried pancakes/waffles/french toast.

    I'm sorry I have no experience whatsoever with a vent.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  3. #3
    Dear LindaT
    If you got a emergency # to his Dr let his dr know he is nauseaus
    Maybe pancakes were too hard on his system
    Contact the Er if you feel the need to asap

    I keep in touch with my Dr if I need to via emergency

    Thinking of you both
    Hope all goes well

  4. #4
    Senior Member
    Join Date
    Jun 2002
    CA, USA
    Be sure to breath. I wish you lived next door. I know you feel alone with these important decisions but we are listening. I hope someone will chime in who has experience with the trach. I hope the Dr will answer your call. I'll pray. Love to you. Trust your gut on this.

  5. #5
    I did get hold of RT at hospital that advised me to inflate cuff he he felt he would throw up. She sent me to ER doc who also seemed confused.
    No one there ever seems to know how to manage him.
    He finally had some applesauce with his meds and it calmed down.
    Just gave him some Lyrica and Ativan as the neuro pain has him nearly in a panic.
    Gave him a good suction of clear normal snot.
    He can thankfully breath without the vent, but is back on it now. We like to give the lower lobes of lungs a higher volume at night like they taught us at Craig.
    The idiot pumonologist here was completely confused and thought the DME (!!!?!)managed it. Even the RTs roll their eyes at him.
    I'm not trying to play doctor and won't hesitate to call 911 if I need to. I was putting together a bag in case I did.
    I'm a lousey lip reader and the passey muir was bothering him.
    And I was NOT breathing. It is true.
    I worry about aspiration not to mention skin and everything else and just overwhelmed me.
    When he was there in local hosp 09 they only wanted to send him to NH not believing we had equipment at home etc.
    Finally the nurses and RTs got behind us and we have been good since.
    My fear is once you get in that horrid loop it is hard to escape. They just don't know what to do for someone like him.
    Thanks for being there. Typing to possibly no one at least calmed me down a little.
    He has eaten pancakes before, not sure if that was the problem.
    I try not to do this, but tonight was a night of WHY did my sweetie have to get the high level. Life ain't f^ckin' fair as we know.

  6. #6
    It is sad your local doctors don't know anything. If it happens again that you need some advice I would call North Memorial in the cities. It is where I got medivaced (sp?) and they see a lot of spinal cord injuries. I was in their inpatient rehab for six weeks before they sent me to courage center, they had people who knew tons about SCI and are there 24/7. The number is
    (763) 520-511 and make sure you ask for the inpatient rehabilitation dept on the 7th floor.

  7. #7
    Senior Member
    Join Date
    Aug 2007
    last house on the left
    OMG Linda,
    I just found this and I am so sorry that you and Dave have both had such horrible nights. It truly sucks that information is so difficult to obtain, and that help is even harder to obtain. I hope things calm down today for you and that you are able to get some much needed rest.

  8. #8
    Linda: Do you ever use the nurse line at Craig? Might me a good resource to keep on hand and beside your phone.
    Every day I wake up is a good one

  9. #9
    Moderator Obieone's Avatar
    Join Date
    Aug 2001
    Oh Linda I'm so sorry - I'm just now reading this as well - one of the few nights I'm not surfing CC .... ughh ..... I hope things have calmed in your house.

    I have zero experience with everything you folks dealing with vents have to cope with - having to depend on a machine that's basically keeping someone alive puts you in a totally different universe than the rest of us - as if life isn't complicated enough you're both so much more vulnerable that everything goes right ...... and geez if you can't depend on the ones who are supposed to know about these things to help you when things go wrong ..... WTF .....

    There needs to be a plan in place for situations like this - you need to have things plotted out for worse case scenarios like what happened this night (and like the storm nights you had) aides not showing up - equipment failure etc. - and when you're sick all bets are off because the stress you put yourself under is only going to make you sicker .... right ???? If you have things kind of spelled out for yourself in advance then some of the fear is aliveated and you take back a little more power. I mean actually write it down, have supports in place etc. .

    Aggh .... I really have no idea what I'm talking about so I hope someone that has some experience with what you face pipes up with something useful for you ........ in the mean time I'll do what I seem to do best and pray you're bathed in the light I'm always calling on ...... {{{{{huglinda}}}
    ~ Be the change you wish to see in the world ~ Mahatma Gandi

    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  10. #10
    Senior Member marycsm77's Avatar
    Join Date
    Aug 2010
    Long Island, NY
    hope everything is ok and you and dave are getting some rest.

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