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Old 10-14-2009, 02:21 PM
amyk amyk is offline
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Hello! I have been reading the postings here for a few months now and I decided that I really want to be a part of this supportive, encouraging group. Our son, Jonathan, was trached in August of this year. He is on the vent almost all day and is on for sure all night. We hope to have him off during the day at some point in the near future. Jonathan has not been able to attend school yet this year due to complications after surgery that we think are possibly related to his shunt. We have learned the trach cares pretty well and are pretty comfortable with everything. The problem we are having is with our day nurse. She is a take-charge kind of person and wants to be the one in charge around here. She seemed to be very experienced when we first met her (and that's why we chose her) but when she was quizzed on emergency trach safety last week by our RT from our DME company she failed miserably and she got very defensive. She's been doing some things that have really bugged me and I have addressed those issues with her and she just stares at me as if to intimidate me. She is a very nice person and Jonathan seems to like her, but I really need to be confident in her skills. I really need help with Jonathan so I can get away during the day for a break, so I am hesitant to just let her go. Eventually he will go to school and I really need to make sure she's competent. I had a talk with her a couple of days ago about some of the issues and probably need to have another talk again. I just don't like to confront and would rather avoid it. Maybe it's obvious what I need to do, but I'm looking for advice from those of you who have been there.
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Amy ~ Mom to Jonathan (2/11/97) spina bifida, shunted hydrocephalus, multiple shunt revisions, Chiari II malformation, G-tube, central and obstructive apnea, tracheotomy 8/10/09, ventilator at night and CPAP during the day, as needed. Also mom to Jonathan's twin sister, Elizabeth, and his older sister, Anne (19)
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Old 10-14-2009, 08:35 PM
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alizesmom alizesmom is offline
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Welcome, having a nurse is a blessing and a headache. Most of us believe you need to go with your gut when having problems with a nurse. Yours sounds like she needs to be reminded who is the employer and who is the employee. Have a talk with her and maybe her supervisor, write down exactly what you expect from her and what you will not tolerate and post this in a very visible spot. You may need to stand firm and you may need to pursue getting a replacement. Your son's safety is the most important thing but peace in your home is also very important. Jump on this now because, sadly, it will only get worse. By the way, anyone who tries to dominate you is NOT a nice person. Hope you can settle things to your satisfaction. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.

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Old 10-14-2009, 09:45 PM
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lynn lynn is offline
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Welcome, glad you found us. Sorry you are having such a problem with your day nurse. If she doesnt know her emergency protocol though, she isn't really any help to you or your son (if he would ever need it).. If you really dont want to let her go, you can suggest trying to train her to the way you like things done, but as you said~ she seems like she wants to be in charge so that probably in reality wouldnt work. Have you brought up any of your concerns to your case coordinator? Can you get a replacement if you do let her go? I would not feel comfortable with someone who I dont feel knows what to do in an emergency. (especially with school~ and when you cant be around) I had many nightmare nurse experiences before deciding to give up and do it alone, but am now in the process of trying to find someone because my son has to begin school (probably sometime in Jan).. I will not let him go unless I find someone who I believe would do just as well as I would in an emergency. Some of the best nurses I did have, really didnt have a whole lot of trach /vent experience~ but were very willing to learn and ask questions... I would rather explain, than find out in an emergency that they had no clue what to do or why it needed to be done.
hope you can figure it out soon.
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Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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Old 10-15-2009, 09:32 AM
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Big Al Big Al is offline
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Welcome, My advice is to let your agency take the first crack at it, let them know what happened and tell them you would like her to have an update on emergency procedures. This is only good if you get your nurses through an agency and that agency is a half way decent one, but that's where I'd start. I think parents seem to want to tackle these issues on their own and that is really the job of the employer. Let them educate and then run your nurse through some scenarios once shes done.
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  #5  
Old 10-15-2009, 11:26 AM
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JWorthington JWorthington is offline
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I agree with Al, if she's from an agency, let them tackle it first. Things work differently in the uk so my advice is probably not much help, but one thing I would suggest is that you write a care plan, indicating exactly what you expect of nurses in your home and laying down some ground rules.

glad you found us!
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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  #6  
Old 10-16-2009, 10:34 PM
amyk amyk is offline
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Thanks for all of your advice. I know it was not a pleasant way to introduce myself and Jonathan to these boards, but sometimes you have one of those days and you just want to "talk" to people who have been there. I did end up letting that nurse go. I think I knew all along I should, but I am so new to this that I felt bad about it and I wanted some reassurance that it was ok. It feels like a tremendous weight has been lifted. We are moving forward in selecting a couple of new nurses to cover the day shift and it feels good. Thanks for letting me air my frustration.
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Amy ~ Mom to Jonathan (2/11/97) spina bifida, shunted hydrocephalus, multiple shunt revisions, Chiari II malformation, G-tube, central and obstructive apnea, tracheotomy 8/10/09, ventilator at night and CPAP during the day, as needed. Also mom to Jonathan's twin sister, Elizabeth, and his older sister, Anne (19)
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  #7  
Old 10-17-2009, 08:37 AM
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JWorthington JWorthington is offline
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Glad you made that decision, sometimes you need to go with your gut and just do what feels right. Don't ever feel bad about venting here, we all do it. this is a place to share the highs and the lows!
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Sam Feb 11 2003 Opitz G/BBB syndrome, mickey, nissen, autistic,supraventricular tachycardia, bronchiolitis obliterans. decanned May 30 2009. 2 brothers Jonathan (23) James (14).
I am first and foremost a child
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