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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. |

06-13-2010, 02:29 AM
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Join Date: Jan 2010
Location: CT
Posts: 161
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For those without night nurses
How do you do it? We just had to let go of one nurse do to unprofessionalism. Now that Sofia is older and off the vent, I was contemplating sleeping next to her if we have to cover a night. If you don't have night nursing, what's your process? Do you stay up or snooze next to your child and wait for any alarms? So far, our comfort level has only been to stay up - usually my husband and I split the shifts. But if we have to do more than one night in a row it's so tough. Thanks for any insight into your amazing abilities.
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Sofia's Mom
born: 9/08 at 24wks 5days (1 of 2 surviving triplets). Home 4/09. Off the vent 1/10. Trach, mic-key button, strabismus, mild hearing loss. First LTR 4/10, Second LTR 7/11.
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06-13-2010, 06:42 AM
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Senior Member
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Join Date: Jan 2009
Location: X
Posts: 2,710
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We have an air mattress that we put in Mackenzie's room to sleep on when we don't have a night nurse. I sleep through alarms unless they're right in my ear. It works for us.
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06-13-2010, 08:25 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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We had another bed in Sam's room for a while and took shifts, one night on, one night off. as we got more comfortable, we let him sleep alone and just used the baby monitor. we never had night nursing.
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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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06-13-2010, 08:33 AM
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Join Date: Apr 2010
Location: Canada
Posts: 261
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We dont have nursing or a pulse-ox... At first David slept in his own room and we just used the Baby Monitor to hear him and now we have his crib in our room. Unfortunately (for Dad) Mom and David have gotten attached at the hip and he now sleeps in bed with us 
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Jessica
Mom to David, Born Jan 1/2010, Trached Feb 11, 2010 for Bilateral Vocal Cord Paralysis and Laryngotracheobroncho malacia... Currently working on decann attempt #3
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06-13-2010, 10:22 AM
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Mentor
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Join Date: May 2003
Location: Atlanta, GA
Posts: 4,469
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We have never had night nursing. In the beginning (first year or so), Jacob slept next to us in a cradle or crib. At 11 months, he was put on a vent at night and that actually made me feel much better. We also did not have a pulse-ox the first year. Since then he has slept in his own room and we use a baby monitor. I will say that I am wide awake with the slightest movement or sound from him. Also, Jacob is relatively stable (as stable as a kid on a vent can be) and rarely ever needs attention once he's asleep.
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Amanda,Mom to Jacob, greatest kid in the world. X-Linked Myotubular Myopathy, trach, vent, g-tube.
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06-13-2010, 10:42 AM
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Join Date: Mar 2010
Location: New York State
Posts: 346
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We have Rosi's bed in our room. It's practically right next to our bed (I can touch it with my hand). I actually hear her as soon as she needs to be suctioned. I used to hear it upstairs when she was downstairs with a nurse so I wasn't too worried. We have an A& B monitor, but it alarms all the time for no reason. Most often for Apnea as we stand and watch her breathe. It's horrible. So we don't use it. I used to have to stay awake, but then I would doze and still hear her so I started letting myself doze off and then I started just sleeping and seeing what would happen. Since I hear her I just go to sleep. It took some getting used to though.
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06-13-2010, 11:14 AM
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Senior Member
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Join Date: Jan 2007
Location: Colorado
Posts: 3,979
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I think it really depends upon your child, how stable they are, how much sux is required, etc. Even when Ayden was on the vent, when he came home he was stable enough and hardly ever required night time sux AND he slept through the night. So after about 3 months of sleeping in the same room with him, we moved into the next room and then eventually back in the same bed. My hubby and I alternated nights, so one would get 1 full night sleep - plus our room is just across the hall too. We had a video monitor and that amplifies the sound so that we can even hear him breath.
That was our solution. good luck!
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Dawn

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 - 
Follow decan at: http://sleepy-dogs.blogspot.com/
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06-13-2010, 11:27 AM
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Join Date: Mar 2009
Location: Texas
Posts: 323
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We only have night nursing 4 nights a week. We have a video baby monitor and leave our doors open on the nights when we do not have nursing and turn her pulse ox up all the way. I'm a light sleeper so I hear everything and even if water gets stuff in her tubing I will wake up to the sound of it cycling differently. Autumn rarely needs suctioning at night so she pretty much sleeps all night and then if she wakes up and coughs or anything she will set off her pulse ox for me. I actually get more rest without night nursing because I can hear them messing with her at night and she wakes up early with nurses but will sleep an extra hour when they are not here.
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Lacy, mother to Madison (10), Gage (6), and Autumn (1) who has spina bifida, Chairi II Malformation, trach, vent, and g-button. She is pure joy and I am so blessed to be her mommy.
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06-13-2010, 11:45 AM
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Member
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Join Date: Aug 2009
Location: Winnipeg, Manitoba
Posts: 492
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We've never had night nursing (and I'm a single parent) - when Robin was younger (about 2-4) I slept on an air bed in his room, then was comfortable moving out and am always able to wake up to alarms - sometimes even before the alarm I hear something that doesn't sound right and I'm up. He needed more suctioning and had a not-as-good vent when he was younger so it was nice to be right there. Now, he usually sleeps all night unless he is sick. You'll find what works for you - staying up too many nights is pretty brutal on eveyone!
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 Monica - mom of Vincent, Jeremy, Joey, Logan (15) and Robin (15) - trached since 11 months, vent (at night only since April '08), Bard button, O2 24/7, primary dx adenovirus causing scarring of lungs - hence, bronchiolitis obliterans.
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06-13-2010, 12:04 PM
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Join Date: Jan 2009
Location: indiana
Posts: 719
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We never had night nurses either. Eric came home at 16 months old and was already sleeping through the night. He was pretty stable and very seldom needed nighttime suction unless he was sick. He's always slept in his own room with a baby monitor.
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 Jen, proud mommy of Eric. ASD, VSD'S, coarc (all repaired) g-tube removed 2/10, DECANNED 4/7/10!!!!!!!!!!!!!! and baby sister Rose (mild asd but otherwise healthy thank God!!!!!!!
Nothing and no one can beat you unless you let them, and then you will deserve it.
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