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| Pediatric Tracheostomies For parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support. |

01-16-2008, 04:43 PM
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Join Date: Feb 2007
Location: illinois
Posts: 484
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Just a bit of a vent
Jordan is home & still on the mend but he is not 100% yet. He has times where he is just miserable & I can not figure out why, he gets upset & stiff & just mad. I think he still feels yucky. Other times he sleeps & all is quiet. His breathing can be clear at times or if he is coarse, I may hear a wheeze. I am still giving breathing treatments, which help to clear but I can not see in his lungs so I don't know if they are gunky or swollen from all the irritation.
Anyway, my main gripe is I have 1 wonderful night nurse and she cant work 7 days a week. She is great with Jordan & best of all she knows her limitations so she wont burn herself out & be tired caring for him (something I value in a nurse these days) I don't have help tonight & a few other nights coming up & I just don't know how I am going to do it some days. I am already exhausted from worry, my 5 year old, catching up on supplies, doctors, all the other special needs mom stuff & I was having a hard time w/nights when he was healthy. I was setting my alarm for every 2 hours but I don't know if thats enough w/him still being sick.
I don't know how I am going to work, I'm thinking it just isn't possible now & of course we need the cash, next pay day is a week from Fri & it's about all spoken for. I am just frustrated of being so dang tired, even if I get help here & there I don't get caught up in 1 night anymore, it takes me 3. This has been bugging me a while, the whole no sleep issue & it just really gets to me when he is sick. There is nothing I can do about it either which is the most frustrating part. I just have to tough it out, get through it, try not to be crabby w/everyone & be allowed to gripe once in a while is ok, right.
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01-16-2008, 05:02 PM
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Junior Member
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Join Date: Jul 2007
Location: Highspire,PA
Posts: 39
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amen
I feel you I feel you...
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01-16-2008, 05:22 PM
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Join Date: Sep 2005
Location: MA
Posts: 751
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Cathy, is Jordan on any oral steroids? This might be making him a little agitated. I know when Collin is on it he has major mood swings, from miserable to quiet to even hyper.....

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Linda - Mom to Collin, former 30wkr, IUGR, Severe BPD, in NICU 9months (decannulated 8/03), g-tube (removed 9/10), Neurodevelopmental Delays (secondary to complex medical history),ADHD-Inattentive Type, Sensory Processing Disorder
www.nicumama.com
www.purplelotuswebsitedesign.com
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01-16-2008, 05:30 PM
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Join Date: Feb 2007
Location: illinois
Posts: 484
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Quote:
Originally Posted by lac
Cathy, is Jordan on any oral steroids? This might be making him a little agitated. I know when Collin is on it he has major mood swings, from miserable to quiet to even hyper.....

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No but he was in the hospital, maybe he is just going through some sort of withdrawal, or still sick & yukky, or both
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01-16-2008, 06:19 PM
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Join Date: Jan 2008
Location: buffalo
Posts: 881
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I know how exhausted you must be & i get very grouchy & short with people too & u do need to let it out & its ok,i just visualize a day i know im going to be able to sleep,& set it up so i can sleep as long as i want,& just dream of that day & push through!! For the past 3 yrs ive been telling my hubby,that for my B-day i want to sleep all day!! He still hasnt given me that yet!
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 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!!  .Ava 2 years www.aydenava.blogspot.com
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01-16-2008, 09:30 PM
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Senior Member
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Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
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I may not get you any sleep but I'm more than willing to listen to you gripe all you want. We all get it. 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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01-16-2008, 09:46 PM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,484
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RIGHT! This is the place to do it. We get it. I'm sorry for you and I hope Jordan gets better soon!
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SUSAN - Mom to Ainsley (age 6 - DOB 10/18/06) + Evie (age 12) and Adrian (age 9). Adorable and Trached since 11/06 (scarred vocal cords & OSA) but capping with mixed success since 1/09, sagittal craniosynostosis (cranial reconstructions 1/07 & 7/07), MicKey G-tube 06/07, Nissen 10/08, unusual form of cerebellar hypoplasia, hip dysplasia (Surgery 11/07 & 4/10), ptosis(post-surgery).
Blog Link: http://ainsleyrae.blogspot.com/
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01-17-2008, 05:56 AM
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Join Date: Feb 2007
Location: illinois
Posts: 484
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The little bugger kept me up all night but, he was gurggly & needed lots of sx, but the good news is HE NEEDED SUCTION  , that dry croupy cough is finally productive. He is still a bit grumpy but, this time I am actually happy to suction the boy & all the discoloration is gone. I put him in bed w/me last night (what I typically do w/no nurse) and even w/out the humidity he was my little gurgle monster. I hope he finally turned that corner.
I have also come to the realization that, I can't count on help, I am going to be tired no matter if I stay home & nap or not-So I am going to work today. No sense being broke & tired right? Thank Goodness my BFF owns the store I work at, I'd been long fired by now. Thanks for letting me gripe, it really helps but I do hate to complain. 
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01-17-2008, 07:30 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Cathy - you can complain all you want, we understand and that's what this place is here for, as well as the advice and the laughs. There is nothing worse than having too little sleep. We have never had night nursing and I'm still finding it hard to cope on 4-5 hours sleep a night. I think I've just got used to feeling permanently exhausted. That's a great idea about sleeping all day on your birthday, that's what I'll ask for this year!
Juliex
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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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01-17-2008, 09:14 AM
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Senior Member
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Join Date: Oct 2006
Location: Ontario Canada
Posts: 1,921
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All 3 of us just got over some sort of bug. I know when Jacob is sick, it just seems to "push us over the edge". It's like we've found a way to cope and manage under "normal" circumstances and when one or more of us gets sick, it throws everything off!  Hang in there Cathy 
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Mom to Jacob, 26 Weeker - Our miracle boy, hero  and the light of our lives  Born 06/25/06; trached 10/17/06 for bilateral vocal cord paralysis, laryngomalasia, tracheamalasia, acquired subglottic stenosis, Failed Double Stage LTP 2009, Failed Single Stage LTP 09/16/10, Retrached 10/03/10;CP.
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