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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
04-10-2007, 11:05 AM
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Update on Nathan
Well, the cultures came back--we have pseudomonas and parainfluenza! Poor Nathan. They hope to put in a picc line today or tomorrow and send him home for 2 weeks of iv antibiotics...
Now, we have the fun of scheduling another home health agency to handle the picc line, antibiotics and the trach. Yippee! And, Cincinnati will not do anything next week because of the parainfluenza--nasty little virus! We're more freaked out about the dread pseudomonas! So, we are postponed a month for the passy trial and gran removal  Such is the life of the trach and all of the delightful little things it grows!! Thank for the prayers and good thoughts. Nathan is having fun riding the iv pole around his room...he is soooo 18 months! 
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Kristy Nathan is 7! Trached at 2 hours old--laryngeal atresia. Double stage LTP 5/26/06, double stage LTP 1/23/09 and single stage LTP 4/21/09. Airway has restenosed, but we're still trach free 9/2012. Ding dong, the trach is gone!! 
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#2
04-10-2007, 11:18 AM
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Don't cha love kids? They can make a toy out of ANYTHING. Sorry to hear he's got the nasty bugs but at least you know what it is and can treat it. I hope he's well real soon!
Susan
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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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#3
04-10-2007, 11:24 AM
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Ugh! The dreaded Pseudomonas! I hope little NayNay is feeling better soon and you can start the PMV trial and get the gran removed.
 Sarah
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Sarah, Mommy to Malakai (9), Aubrey (8), and Keturah (6) trach, vent, Chiari I, BVCP, CCHS http://s109.photobucket.com/albums/n73/lovemymak/  
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#4
04-10-2007, 01:07 PM
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Well, it must be that time of year! Donovan's got a couple of bugs himself! We're using inhaled Tobi for him, however. No IV for that. Hope Nathan gets better quickly!
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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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#5
04-10-2007, 05:50 PM
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LOL@ riding the IV pole, makes the best of a crummy situation huh ? Hope he kicks those bugs soon !
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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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#6
04-10-2007, 08:53 PM
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Oh...pseudomonas can make them feel so bad and so sick. Ick! I hope Nathan is feeling better. I hope you are able to get some rest. Gotta love that boy's spirit...riding the IV pole! Ha!
Jennie
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Mommy to Hannah 8/2/03: fmr 25-weeker, trached 11/03 for subglottic stenosis, LTP 4/05, CTR 4/06, LTP 1/07. Decannulated 1/19/2007!! Gearing up for reconstruction #4; Also Mom to Brianna, 2/22/98: fmr 24-weeker, a little dramaqueen. My amazing gifts.
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#7
04-11-2007, 04:25 AM
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I hope he gets feeling better soon and am so glad you know what it is and are on your way out the door. "riding the IV Pole" never heard that. We've been lucky to keep away from that since forever. Even though Chase shuts down eating we aggressively put stuff in that blasted button of his.
An off hand question...did they talk about some "new vaccine" for pneumonia type things? It has a number at the end of it and after this last round of illness our PED suggested it...just wanted to know if any one else had...
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Leslie, mother to Chris (12), Chase (3) and Chad (2) I have 3 boys cause I didn't want 4. Chase- X 31 weeker, Trachea Esophageal Fistula, Esophageal Atresia, Pyloric Stenosis, VSD, Pulmonary Stenosis, Severe malacia (90% occlusion)..one failed decann attempt
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#8
04-11-2007, 02:39 PM
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Poor Nathan, hope he's better soon. So glad you don't have to stay in the hospital, in the uk they won't let a child out of the hospital on an IV
Juliexx
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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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#9
04-11-2007, 02:46 PM
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You are braver than I am! I wouldnt bring Alli home with an IV, especially a PICC line. She is notorious for them blowing out and pulling out and , well, you get the picture. I hope he's feeling better soon. 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 [IMG] [IMG]
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