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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. |

08-26-2004, 12:59 AM
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I am having such a hard time with sleeping. Camdon is on a vent, and we don't always have a night nurse. We have been told to sleep in the same room and then just wake up when his alarms go off. The problem is that I can't even fall asleep...I am so tired, but I have so much anxiety about me not hearing the alarms. Camdon has only been home for 2 months...does it ever get any better?
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08-26-2004, 06:48 AM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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Tanya, Would you sleep too heavily if you tried a sleep aid ? I use the Walmart store brand and can still wake to even tiny noises-- or maybe a Benadryl-- but I would sure try one or the other. It will get easier as time passes. It was almost 4 months before I could sleep if Mike wasnt awake with Alli, but we made it somehow. We didnt have a vent tho so I know that's probably more stress on you. I hope you can find a way to get some rest! Deb
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Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08
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08-26-2004, 09:02 AM
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Mentor
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Join Date: May 2004
Location: Missouri
Posts: 5,260
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I agree with the post above. Why has the insurance not authorized night nursing? Is it an agency problem? My son is on a vent too primarily at night and we have 24 hour coverage. Of course, the doctor authorized that and actually insisted on it.
When Donovan came home last year, it too me 2-3 months to even sleep with the nurse there. It was rough on me. Our room was right next to Donovan's too. You do get used to it over time, but I can't speak to having to cover on a regular basis. My husband and I both work and we have to sleep. We have covered a few nights on occassion, but rarely. We really don't sleep when we do and neither do the nurses.
I ended up on some antidepressants because of the anxiety and stress of being home. I worried lots and I'm a light sleeper. They have helped a lot. Also, I tried some benedryl too on occassion to sleep.
Let us know how things go.
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Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad!
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08-26-2004, 09:21 PM
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 Hi I just would like to say what a beautiful baby and beautiful pic that is!!!!! 
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08-27-2004, 01:29 PM
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Member
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Join Date: Mar 2003
Location: St. Charles, Missouri
Posts: 424
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We started off with night nurses, but when I did not have one due to shortage or calling in sick, I would actually stay up all night with Hannah. At that time her bedroom was our dining room and I would sit in the living room. My husband would get up around 5am so that I could catch 2 hours of sleep before I had to get up and ready for work. As time went by, I got more relaxed but found it very hard to catch any sleep on the sofa. When Hannah was 2 1/2 yr I decided it was time to move her upstairs to her bedroom. This way if I was without a nurse, I could at least get some sleep in my bed. Within a matter of months, I cut night nursing from 7 nights to 5 nights. After 3 months, I cut back to 2 nights and finally this past January got rid of night nurses all together.
I too found it very difficult to sleep with the nurses in my house. Now with no night nurses, I actually sleep very good and still get up to the sound of the alarms. Although Hannah is in the room next to me, I still use the baby monitor - turned up full blast.
Good luck and hang it there...it will get better.
Karen
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Mom to Hannah, born 12/5/2000 with Congenital Central Hypoventilation Syndrome. Trached at 3 weeks, vented during asleep hours only (Since March 2004). Along with her brother, Justin, they are the joy of my life.
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