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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
07-02-2009, 02:51 PM
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So Frustrating!!!!
Well, I swear Jaden just can't catch a break. We went back to Cincinatti last week to have the stent removed that had been placed back in March after his LTP. We were told that his airway looked really good. The pictures did look amazing, it was the most open I have ever seen his airway. After spending the night we headed home, 9 hour drive, and were to return in a week for a scope. Well, he had his scope done on Tuesday and his airway is more swollen than ever! Dr. Rutter said that structurally it looks good and looks like the grafts are holding up, it is just all of the soft tissue swelling. They went ahead and dilated his airway and it did open back up nicely, but they didn't act that hopeful that it would stay open. For some reason his airway just really likes to swell and I don't know how the heck we are ever going to get the trach out if it keeps doing this and no one seems to have any answers as to why. So the plan now is to head back the beginning of August to do another scope and possibly place a metal stent or remove any granulation tissue that may have developed. So far his airway still seems pretty open, he is able to get a pretty loud voice out, so we are praying that by some mirracle it will stay open, but hate to get our hopes up too much! We are so ready for it to be his turn and he is now old enough that he is getting frustrated too!
__________________
Katie mom of 26 weeker Jaden(08-03-01) trached at 2 1/2 months, 2 CTRs and 2 LTPs! Also mom of Haley(1-29-00) and Coleby (07-02-07). 
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#2
07-02-2009, 03:24 PM
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I am so sorry Katie, that just really sucks. Poor Jaden, I can imagine he must be really fed up of it by now. Hope August brings better news
 Julie x
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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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#3
07-02-2009, 04:22 PM
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Hope you get better news in August.
__________________
 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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#4
07-02-2009, 05:58 PM
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it sure is time for you guys to get a break, i am sure he really knows whats going on and he has had enough as well.my heart goes out to you all. i hope and pray that August brings nothing but good news. we shall keep our fingers crossed here. Best of luck..
__________________
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#5
07-02-2009, 08:01 PM
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I'm sorry it's not going better. Hoping it looks hugely improved in the next scope...
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#6
07-02-2009, 09:43 PM
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That is just brutal! I really hope with time the swelling goes down.
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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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#7
07-03-2009, 01:06 PM
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I really hope you receive some good news in August. I know that you all have been through an awful lot and Jaden definitely deserves his turn.
__________________
  Bridget, Proud Mother of Jaelyn (12/19/05); former 25 weeker, subglottic stenosis, BPD, PDA ligation, ROP, incontinentia pigmenti, single stage LTP 9/2007, double stage LTP 6/2010 and her sister Jordyn (8/16/07)  
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