I need help.... Couple of hard decisions to make by 7am

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   kmackey32posted 13 years ago

   First Brionna has to have sergury to drain the fluid from her brain. Spinal taps have stoped working, eithor a blood clot or scar tissue has stopped this procedure from working any longer. The questions are, Do they take her off the ventelator and take her to the operating room and bag her for 15 minutes during the operation hopeing she dont die in the process or perform the operation along bedside, risking infection and this has never been done before. Second, perform the operation tommaro or wait till Monday. She could be more stable by Monday or she may get worse due to the pressure on her brain.

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      schoolgirlforrealposted 13 years agoin reply to this

      I apologize if you take offense to this
      
      I would pray.  There doesn't seem to be alot you CAN do....
      
      Just meditate, and let the answer come to you
      I hope this helps, It's all I can offer but I wish you the best

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      richtwfposted 13 years agoin reply to this

      I'm sorry to hear your predicament.
      
      I think, no disrespect to the well-meaning of all the hubbers here, but you really should spend as much time as possible seeking second, third or more possible opinions with regards to the two procedures that the surgical team might carry out.
      
      The more professional opinions you have will better place you to make the hard choice of having to decide what's best for Brionna.
      
      The opinions should give you an indication of risk and even if they have never performed such a procedure they should be able to make their best professional assessment based on gut instinct if absolutely necessary.
      
      If push comes to shove you could ask as many surgeons as you can, what they would choose if they were in your shoes and Brionna was their daughter. That's what I would do, then based on what the majority said they'd do then that's what I would probably go with.
      
      I don't understand why you have been left to soul-search this tough decision all by yourself. Be strong and do all you can to get as many opinions as you can before you have to commit to an extremely difficult decision. I hope that this sincerely helps you and my prayers and thoughts go out to you and Brionna.

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   lrohnerposted 13 years ago

   If I were you, I would make sure that I had the best doctors available making decisions, and then listen to them. I don't think any of us are knowledgeable enough to figure out what is best for Brionna--although my gut says to get the fluid off the brain as quickly as possible.
   
   My thoughts and prayers are with you, K.

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      kmackey32posted 13 years agoin reply to this

      Thats what my gut is telling me. The Doctor said she will not say whats best eithor way as she does not know....

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         rebekahELLEposted 13 years agoin reply to this

         she probably doesn't know plus they have to watch what advice they give now.. but I would ask again, a doctor is supposed to advise you. she should have some sort of medical opinion.
         
         
         sending you hugs and will be thinking of you and little Brionna.

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   wildernessposted 13 years ago

   I think Irohner has hit the nail on the head, K.  I doubt there is anyone here that can give any better advice than your doctors.  Listen to them.
   
   My thoughts, too, are with you.  I can't even begin to imagine what you're going through with little Brionna. 
   
   Stay strong, K, and don't let your emotions get in the way of what's right and best for her.  Too easy to wait and hope, when she might need immediate help.  Your best source of information and advice is her doctor - listen to him.

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   kmackey32posted 13 years ago

   The Doctor will not and cannot predict what the best decision for Brionna is. There are risks eithor way...

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   Flightkeeperposted 13 years ago

   Wishing for the very best of outcomes for Brionna, you, and the rest of the family, Kmackey.

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   Kidgasposted 13 years ago

   I wish you the best whatever your decision.

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   KCC Big Countryposted 13 years ago

   I really hate that you're having to go through so much, KMackey.  These truly are gut-wrenching decisions you're being asked to make.  Listen to your heart. Everything will work out fine.  Trust your instincts, you're a good mother/grandmother.  (((Hugs)))

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      Lisa HWposted 13 years agoin reply to this

      I second everything KCC  has said here.   I'd just add that you have far more knowledge and experience about facing what you've been facing with Brionna than anyone else who hasn't faced such a situation or any of the decisions you've had to make.  Nobody would feel certain and sure in your situation (not even the doctors), but just keep trusting those instincts and in your own judgment.  You're a good mother and grandmother, and that's what going to make whatever decision you make or can't make the best one.

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   Cagsilposted 13 years ago

   Hey Kmackey,
   
   For what it's worth, I have faith in you to make the decision. It's a difficult situation to have to deal with and your doctor by all accounts should know what is best in this situation.
   
   I can only send you positive thoughts and best wishes to you at this greatest hour. I say do what you feel is necessary for her best interest of life. I'm sure whatever decision you make will be the right one and please believe that in yourself.
   
   Take care.

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   WryLiltposted 13 years ago

   My sister had a shunt placed in her head as a baby, to drain fluid. A permanent one. The condition is known as Hydrocephalus.
   Is that what Brionna is going to have?
   
   I personally think the surgery bedside sounds the safest. If they are going to clean the area very well before hand that would probably be best. Surgeries have germs in them too.
   
   Good luck making your decision.

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      aguasilverposted 13 years agoin reply to this

      I'm with Wrylitt, the bedside sounds safer, but I guess your doctors are specialists in premature birth, and should know which is safer, sounds like they want you to decide in order to satisfy the hospital insurers.
      
      If you believe, hand the whole thing over to God, He will give you the guidance you need, and already knows the outcome.
      
      Meanwhile I pray that God guides the hands of the surgeon.
      
      John

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    Rochelle Frankposted 13 years ago

    Though it seems impossible, try to calm and clear your mind of all the confusion you are feeling, so you can find an answer.
    
    Sit down and breathe, admitting that you do not know -- the best answer may come if you give it a chance.
    
    We are thinking of you and pulling for the best outcome for the baby.

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    Lisa HWposted 13 years ago

    I've been watching for updates, and I'm so sorry to learn things have taken this kind of turn.  Usually, in situations when don't doctors know, don't they get other opinions from other doctors they think may have dealt with something similar?  Do you think the doctor may have spent time earlier, trying to get other professional opinions? 
    
    I don't think anyone on here would ever try to guess about what they'd do in your situation (and I think even if there were a doctor on here that person wouldn't dare make any guesses or offer opinions since she or he hasn't seen Brionna, and if s/he weren't a specialist dealing in the area of very early premies.
    
    I really think (and maybe I just plain don't know how permission/waivers of liability, etc. work when it comes to NICU emergency decisions..) that the doctor(s) would make the decision if you feel absolutely uncertain about which of the three risks are the lesser of the "evils" to you.  I suspect the doctor(s) is respecting your right/roll to make the choice (and, again, maybe I don't know anything); but I can't help but think that, underneath, the doctor knows which way she'd go.  I wonder if, maybe when they give someone x amount of time to make the choice on their own, they're just not allowed to offer any input that anyone could later say, "I was influenced by what Dr. so-and-so said in making my decision."  Maybe they're required to give someone in your situation x amount of hours to think, and maybe choose, before they can offer what they'd do if they were you?   
    
    If, somewhere way down in your heart, there isn't one risk you lean toward over the the other; maybe you just have tell the doctor that and ask her to make the choice.  Who knows, too - maybe some, little, thing will change one way or another during the night, and point toward one course of action over another for the doctor.
    
    Maybe tonight you can come around to sorting out which risks, if any of them, are things you find least "objectionable" (for lack of a more appropriate word, but you know what I mean) in your heart; and maybe even if you narrow it down to two risks, if not one, that could help the doctor have some idea of what not to do?
    
    If, by any chance, there's absolutely no way the doctor will go ahead without your being able to make a decision; then I'd think your "decision" would essentially end up meaning no doing any procedure at all, and leaving things until Monday. Based on what the doctor has told you about possible outcomes of waiting until Monday, is that something you'd find at all acceptable?
    
    I know none of this is at all helpful, but your thread is such a serious one, I couldn't say nothing.  I think you need to trust that the doctor(s) will be able to help with decision, but trust your heart too.  I'm under the impression (based on a couple of things you've written) you're someone who does believe in God, so maybe this is a time to pray for some guidance about the decision too.
    
    There are lots of thoughts and prayers with you.

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    cindyvineposted 13 years ago

    I don't think its fair of the doctors to place these kinds of decisions on you.  You don't have the medical experience they have and you are involved emotionally.  And if you make a decision and it doesn't work, you'll blame yourself, that's only natural.  I think it's a hard decision, even for the doctors, and by passing the decision-making onto you they are passing the buck, very cowardly of them.  Hang in there and I have to say, my gut says bedside.

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    Lisa HWposted 13 years ago

    I don't really think the doctors are either passing the buck or being cowardly.  I think it's more likely they're respecting Brionna's grandmother's right to have some say in which risk is taken, which option is most acceptable to her if all does well, and which option is least objectionable if it doesn't.  Sometimes it is the people who have the emotional investment (or way or another) who most deserve to have input on choices.  I don't know Kristi, but I think, after all the choices and difficulties she's faced since Brionna has been born; she knows what she's facing, knows that even the doctors don't have any easy answers, and will know she can't blame herself if all doesn't go well.  People have a way of rising to the occasion, and Kristi has been doing that since August 11.  I think by offering Kristi the opportunity to have some say in this difficult situation the doctors are trying to give her at least a little control (in a situation in which nobody has real control) over which possible outcomes and risks she ends up having to live with.  Maybe it looks like they're passing the buck, but I don't think that's what they're doing.  If she ends up "passing it back" to them, they'll at least know they didn't just take such a sobering decision out of the hands of the person who will live with the outcome (whatever that may be).  Maybe I have too much faith in the particular NICU doctor(s), but those people deal with these situations all the time, and they know the issues parents have to face and live with. NICU's are a whole different world with a whole different set of how things are done.   
    
    (It's about 1 a.m. here in the Northeast US.  Kristi may not even be on here now.)

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       kmackey32posted 13 years agoin reply to this

       Your right Lisa, I was in bed but back up at 430 am.....

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          Lisa HWposted 13 years agoin reply to this

          For some reason, I'm still here.   How are you doing?

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             kmackey32posted 13 years agoin reply to this

             Wow Lisa, u must be tired. I'm ok....But anyhow I just think the doctors feel no 2 people are alike and what may have worked for 1 may not work for someone else. I am thinking I should go on my gut, which is at bedside today, which keeps playing back in my head.

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                Lisa HWposted 13 years agoin reply to this

                Glad you're OK.   For what it's worth, I think you're right to go with your gut.  (I'm not tired.  That's the problem.  I've been doing nothing, for the most part, for a few days.  )

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                   kmackey32posted 13 years agoin reply to this

                   Yea my gut hasnt steared me wrong yet and if something happens then it was ment to be......

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                      kmackey32posted 13 years agoin reply to this

                      The day they turned the tables an we didnt take her off the ventelater for some reason I knew that was going to happen.... Even though the nurse stated she had never seen that happen before and was blown away when the doctor changed things

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                      Lisa HWposted 13 years agoin reply to this

                      When it comes down to it, there's only so much (no matter what the situation or the person) people can do sometimes.  People make their best judgments and do what they believe is best.  You're right.  There's a point where what's meant to be just happens.

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                         kmackey32posted 13 years agoin reply to this

                         Yea, i just wish my daughter could be of alittle more help even though she is a teen.

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                            Lisa HWposted 13 years agoin reply to this

                            Do you have adult relatives or someone else awake and around you this morning?

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                               kmackey32posted 13 years agoin reply to this

                               No, I am the only one up but my boyfriend will be getting up for work shortly... I do believe in God but for some reason have a hard time on the topic or find it weird to discuss it. I dont know why but I just feel religious things are personal. I spoke with my mom last night and weird for the first time in my life she even discussed it, maybe thats why I dont because thats how I was raised. She also told me this is one thing I cannot fix...

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                                  kmackey32posted 13 years agoin reply to this

                                  At work I deal with death everyday even though i am close to some of these people and even when my own gramma died it wasnt hard because I knew they had lived there lives and it was there time but this situation is so different...

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                                     Lisa HWposted 13 years agoin reply to this

                                     I missed this reply earlier.  Oh, I can only imagine how different this situation is from the kind of stuff you deal with at work.   My aunt had a baby born with severe birth defects, and my mother often talked about how difficult it was for anyone to know what decisions to make about him.

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                                  Lisa HWposted 13 years agoin reply to this

                                  It's nice you have some support from people who aren't as young as your daughter.  I'm the same way about belief and faith and all that.  It is personal.   I imagine it's awfully hard for your mother to watch you go through this too.   I suppose I should sign off so I won't monopolize the time you have here this morning.  Other people may want to see how you're doing or check in with you.   I'll be thinking of Brionna and watching for word later.  Hopefully, all will go well.

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                                     kmackey32posted 13 years agoin reply to this

                                     Yes, my mom did say, did you ever think it your lifetime you would be facing this. Ofcourse never....I will let you know. I will wait for the doctors call at 7am and may just get in my car and drive to Pittsburgh. I offered for my daughter to go an miss school but she declined.

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    cindyvineposted 13 years ago

    My heart goes out to you and your daughter.  I really don't know what else to say.  It's hard to comprehend what you guys must be going through.

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       kmackey32posted 13 years agoin reply to this

       Thank you Cindy.... Its been touph, a month of constant nerves..My life has stoped and just focused on this right now and i find my self not being able to focus on anything else...

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    KCC Big Countryposted 13 years ago

    Just checking in to let you know you and your family are in my thoughts.  I won't be near a computer until Thursday.  I'm wishing you all the best KMackey.  Things will work out just exactly how they are supposed to and you're more than strong enough to handle any outcome.  You're a tough lady and you've shown incredible strength through this ordeal.  Be easy on your daughter, she probably realizes how ill-prepared she was to handle this (who could be??!!)  But, being so premature, she's had more than her share of setbacks and obstacles.  Take care of yourself, KMackey.  LisaW and others will be here while I'm gone to help you through this.  It really warmed my heart to see LisaW was still here when you got on in the wee hours of the morning.

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    prettydarkhorseposted 13 years ago

    Maybe by this time you had your options already, With prayers, I am really praying Brianna will go through all of the surgery successfully, remain steadfast and be strong.

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