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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. |
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#1
03-06-2009, 01:16 AM
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JJ update! Issues with reuse of ties solved at hospital
hey you guys thanks so much for all of the feedback on the reuse of trach ties and caths. The hospital is ordering trach ties so that JJ does not have to use them over now! I feel much better about that! I am hoping that we get enough supplies especially caths when he comes home not to have to reuse. JJ does have KY medicaid. Docs say that it will still be a few months before he gets to come home! If anyone is from KY and knows anything about KY medicaid and what they pay for let me know please. Just the other day JJ was having lots of spits actually projectile vomits with his bottles and even his NG feedings. So they were talking about a nessen and a g-tube. But they have tried thinckening his milk and it has worked GREAT he is now taking every bottle and and there have been no spits just wet burps to be expected. We are so happy! We just have to get those vent settings down. He is on a rate of 50 but on 23-25 percent O2. Please just keep him in your prayers. It is so amazing what thinckening feeds do!
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#2
03-06-2009, 03:18 AM
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Sebastian also did the projectile vomit thing ... three things helped him 1. We discovered he was lactose intolerant (big DUH) , 2. thickening up his bottles and 3. When he started using his PMV it helped tons. Now, don't ask me to explain the last one, it is just our personal experience..lol...
Catch me on Facebook and I will fill you in on the joys of Passport/KY Medicade ..lol
__________________
May Mommy to Sebastian(1-24-06), hardcore former 26 wk preemie, had and kicked butt of many issues, dealing with a few more , including autism. Trached 4/16/06 @ 3 months due to severe BPD and mild Tracheomalacia. Decanned 9-9-09 and doin' just fine !  http://sebastiansjourney.blogspot.com/
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#3
03-06-2009, 05:22 AM
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I'm so glad to hear that thickening JJ's fluids helped him keep his food down where it belongs
 ~Maggie
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Father (and mother) to Tommy, born via an emergency EXIT to Trache 8/1/06. Diagnosed with Congenital High Airway Obstruction Syndrome (CHAOS). VACTERRS Syndrome. Vocal cords completely fused until Double Staged LTP 03-03-08, refused shortly after stent was removed. Second Double Stage LTP 1-20-09. CarePage: BabyBoyce “With man this is impossible, but with God all things are possible.”
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#4
03-06-2009, 07:47 AM
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I'm glad you got the issue resolved!
We have Humana/KY Medicaid and I don't have any complaints. What Humana doesn't cover, Medicaid picks up. It's been a Godsend for us. 
__________________
Gabriel: born 12-07 PRS G-tube and Nissen 1-28-08 Trach 6-06-08 Palate repaired 2-03-09 www.caringbridge.org/visit/gabrielsmith
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#5
03-06-2009, 09:09 AM
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I'm glad you are getting the ties, that's great news. We found sam was better on thickened feeds too, and the pmv helps, it is described as a speaking and swallowing valve in the literature and has certainly made a big difference to Sam's swallow - no good on the speaking side though
 Julie x
__________________
  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
03-06-2009, 08:03 PM
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glad hes not spitting up anymore,things must be turning a corner!!!....Angie
__________________
 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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#7
03-07-2009, 02:36 PM
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That is WONDERFUL about the thickening!!! Just make sure the hospital keeps him on an incline too. Ayden actually used a boppy a lot in his hospital bed.
I hope he continues the good progression! With the vent, sometimes they just need time to get stronger. Ayden too was vent dependent. Good luck~
__________________
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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#8
03-07-2009, 03:10 PM
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Last edited by bryantem : 02-21-2011 at 03:23 AM.
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