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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
06-16-2005, 07:15 PM
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Thank you for remembering us & your well wishes for this week
 Everything went well. The broncs looked great. Milo was downsized to a 4.5 Shiley. (he had a 5.0 Bivona FlexTend, we wanted to get rid of the protruding trach b/c he kept tugging on it. However the ENT seemed to think he should have a Shiley. I really wanted the Bivona w/out the FlexTend. She feels it's not neccessary and that the Shiley is a good choice for Milo. Since I trust our ENT I am going to wait and see what happens). Any opinions on this? Also, I have noticed that Milo's chubby neck is hanging over the Shiley a bit. I am so afraid of his neck occluding the trach. He is too active & he doesn't comprehend yet why he shouldn't pull on it. Oh yeah, and the HME that we use doesn't fit well under his chin now. We need to use one w/an O2 port. Elijah's bronc looked good too, she feels he will have no problem decanning when the time is right. Granuloma was removed. She injected the area with kenalog (?) to prevent it from returning. Now we just have to hope the tissue doesn't grow back & get off the O2. Please cross your fingers for next spring! Thank you!  Kerryoh and ps, got a script for a PMV yay!
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr 
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#2
06-16-2005, 07:21 PM
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Kerry:
I was so happy to see that you posted and it is all wonderful news...well maybe not the chin hang over LOL but other than that. Happy happy happy for you and the boys. Hugs, Roberta
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Married to Merrill...33 years...Blessed Mom to 21 as of last count...  Michael-33, Maxwell-29, Mallory-27 Justin-23, Marshal-23, Jesse-22, Jeremy-20, Micah-18, Mordachi-15, Jericho-14, LisaMarie-12, Joseph-11, McClain-9, Joey-8, MacGyver-5, Maverick, McCoy 2, his twin sister Macylea and the youngest Montana 16 months. Malachi and Jason-in Heaven watching over us all. http://www.merrillsimonfamily.blogspot.com/
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#3
06-16-2005, 08:55 PM
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Great news, Kerry! I am glad everything looked great for both boys. Jacob went through the chin-covering-the-trach stage. It was very scary because he always pulled his HME off. Once he started tolerating his PMV, it wasn't a problem because he doesn't take that off.
Anyways, I hope this year goes smoothly and you have two successful decannulations next Spring. Amanda
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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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#4
06-16-2005, 09:18 PM
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Kerry
I'm so glad the boys did great. I've been thinking about you all day. I'll keep you in my prayers tonight lots of love carrie
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 Our little miracle, Nicholas Scott born 08/09/02; CHARGE Syndrome, bilateral cleft lip/palate, congenital heart disease, trach and g-tube, hearing aids. Decanulated!
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#5
06-16-2005, 09:33 PM
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Kerry
That's such exciting news!! I am glad the bronch results were good!! Alex had a custom 4.5 bovina (one with the Flextend and one without) and downsized to the 4.0 Shiley. Alex did well with the Shiley despite partially blocking the trach with his chin..... He had just started figuring out the "yanking" when we downsized from the Bovina. At that point, I was glad we didn't have the portruding trach b/c it would have given Aidan an easier target. Aidan pulled on Alex's trach constantly. Anyway, congrats on the good news!! Whitney
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 Mom to twin boys, Alexander and Aidan born on April 1st, 2003. They are former 25-weekers. Alex was trached from 10-03 to 4-05. Also mom to my lovely new daughter Amelia born August 19th, 2011!
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#6
06-16-2005, 10:23 PM
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Kerry,
I am glad to hear the boys are doing good! I was thinking about you guys. Have a good weekend! Lora
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Lora - Mom to Zoe (12/26/04), former 27 weeker, BVCP, Subglottic Stenosis, mild reflux, g-tube http://www.caringbridge.org/visit/zoeglasel
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#7
06-17-2005, 10:08 AM
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wow this Shiley is little and it's difficult to change ties!
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo! The Birthday Boys by TwinTransfusion, on Flickr
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#8
06-17-2005, 03:19 PM
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Sounds like pretty good results for your boys...I hope the O2 is gone soon!
The trach guards are made here in OR. We always use a nose, but a few times had her nose-less, and had to use these to keep from occluding. (fatty! LOL) They are hard to get, we had to have our ENT call them and ask for samples, he couldn't figure out how to get the guards through a pharmacy. info for them... Tilson trach Guard Re order # TP-100 Beevers Manufacturing & Supply 14760 Baker Creek Rd McMinnville Or 97128 1-800-818-4025 They work great, if you can get ahold of them! Erika
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Mom to Matt 14; Megan 11; and ^Eric Jr^, Levi and Vivian, (ID twins and a spare) born at 26 weeks Vivian was trached due to a mishap during her PDA ligation. **decannulated February 14th, 2006!!** 
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#9
06-17-2005, 11:18 PM
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Jarrett has had a Shiley the whole 2 years that he has had his trach, so we don't know any different. They started us out at the hospital with using a trach guard to prevent him from occluding. I've just recently started leaving it off so that he can occlude it to talk. We still are having a hard time with his PMV. He likes being able to make sound but hates coughing up his secretions.
Anyway, I'm glad things are going good for ya'll. About changing the trach ties....it was hard in the beginning but I have sort of mastered it. First of all, what has made it a little easier for me is cutting the velcro strip that fits in the whole at a sharp angle with a point at the end. I hold the trach in with my ring and middle finger and my thumb then use my pointer finger to bend the side up that you put the tie in. If I have it cut right and bent up then it usually goes right in. I hope that I didn't just confuse you. Hope that helps! Erin 
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