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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
08-06-2007, 06:37 AM
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Bronch today
We are headed to Pittsburgh shortly for what should be an outpatient bronch with granuloma removal then home again. Because of the anticoagulant he is on, they have reserved a PICU bed just in case. Please pray that we get good news and get to come home. Thanks Karen
PS: I'm much better after venting. Read your posts, went to church and ate chocolate so I can face the world again. 
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#2
08-06-2007, 07:40 AM
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Good luck I pray for good results. Alize is a French name given to a warm breeze in the South of France. Hopefully, the test of today will be too.
Michelle
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#3
08-06-2007, 08:55 AM
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Best of luck!!
Lara
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Parents to Isaac, born 12/8/06, idiopathic bilateral vocal cord paralysis, trach'd since 11 days old, repair of acquired tracheomalacia and Decannulated on May 15, 2008, still with some vocal cord paresis (decreased motion)  
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#4
08-06-2007, 09:39 AM
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good luck and it will turn out ok.
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Vennesssa and Chris Married on June 5, 2004 ~ going on 4 yrs but feels like 50 yrs KIDS Stepkids- Morgan 14, Brooke 11  Mine- Randy 11, Christian 8 Ours- Ashley (stillborn 4-9-05)  , Jordan born 6-10-06-(bi-lateral paralized vocal cords)  trached on 6-23-06Decanned on 8-20-'08, Had laser sugery to fix the cords. The back half of one side is gone for now, but will grow back in time. My site http://www.myspace.com/mom_2_angels
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#5
08-06-2007, 12:17 PM
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Good luck! Let us know how things go!
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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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#7
08-06-2007, 01:41 PM
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Hope everything turns out well!
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Rene, Mom to my Angel, Tommy. Born 9/25/06 at 33 weeks, with Single Ventricle Heart Defects and Cricopharyngeal Achalasia (Gtube dependant, poor swallow). Trached at 2 months for Severe Subglottic Stenosis. My little flirt died unexpectly 8/20/08 from complications from undiagnosed bronchopneumonia.  Forever, Tommy's Mommy http://www.musingsofaheartfamily.blogspot.com/
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#8
08-06-2007, 03:41 PM
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Hope all goes well Karen
 Juliex
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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
08-06-2007, 06:00 PM
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Karen: This is so funny...I am at the hospital with Joseph....he has done the same thing and is in PICU till tomorrow.
 Hope that all went well on your end and that you are both home now and just enjoying life. Joseph did well and it is as we have always thought, no decan for him. A few more tests this evening, nothing big and home in the AM.Hugs to you both, 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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#10
08-06-2007, 11:02 PM
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Decannulation not likely. Alize was almost completely occluded and this time it was less granuloma and more tracheomalacia. The ENT lasered some of it away to open his airway more (I'm not sure that this is a good thing). He said the airway was curved inward but not collapsing. He wants to keep lasering it as needed
 . He did mention that there were 2 surgeries that might help but they were complex (probably LTP and CTR if I remember the initials that you have all explained) but he prefers the laser. We see him again in 4 weeks and can get 1)relasered 2)sleep study (but he explained that he can't get the sleep study people to do the study with the trach capped  )or 3) cap and admit to the PICU and monitor. Am I crazy or is he? I see my options as choosing one of his options, going to Dr Cotton (I'll probably have to self pay) or just deciding to leave the trach in. I'm actually leaning towards leaving it in. Are there any problems with permanent trachs I should know about? We've basically ruled out major repair surgery since Alize has been through so much and we're not sure the benefits are worth the risks. At this point I'll listen to any advice you may have. Maybe I'm just tired and my ENT is making good suggestions. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel.
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