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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. |

11-08-2007, 09:58 AM
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Senior Member
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Join Date: Oct 2006
Location: Ontario Canada
Posts: 1,921
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Taking Jacob back to Emergency
Oh my God, DH and I are EXHAUSTED, not to mention how Jacob is feeling! He still was not fully over his first cold and now, his ped thinks he has picked up a stomach bug. She wants us to take him into emerg today so she can check him out (yes, where the Emerg is chalk full of other bugs)! We swore he was getting better and then all of a sudden, he got worse. A different night nurse called in sick last week and the week prior she was wearing a mask, so we have our suspicions. Last night, she swore up and down she is "not contagious". She also let it slip that the Agency really pressures the nurses to come in, even though they are sick, due to the nursing shortage. Well, we will certainly be taking them up on that issue!
I have lost so much work over this, between getting the cold first and then Jacob getting it - we are going on 6 weeks of this now. Decan is now feeling like a distant hope. There is no way they will try to decan until he is well past this (nor would we want them too, by the way)! It just irks me that none of this was our doing!!!! Besides, the ped's ward is still "under construction" and there are still no beds available, so I really do not think we have lost time, from that perspective. Anyway, please send healthy thoughts to Jacob! Any thoughts of "maybe we can go to my parents' for Christmas this year" are effectively stamped out, as there are always sick kiddos there. Having gone through our first cold with Jacob, it so is not worth it. This whole ordeal, has of course just triggered both DH and I regarding "all the loss" of "normal things" we have missed out on with Jacob  It just feels like it will never end. 
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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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11-08-2007, 12:59 PM
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Senior Member
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Join Date: Jun 2005
Location: Minnesota
Posts: 4,727
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Oh Kim, You have so much going on right now! Know that YOU, DH and Jacob are in my prayers. Try to take care of yourself...though I know how hard it is when these little peanuts get sick. I hope you have an end soon.
Jacob--get feeling better!
Kate
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Katie-mom to Mitchell, DOB 12/16/04 trisomy 13 mosaic, severe laryngotracheobronchomalacia trached 5/04, cleft lip and palate DECANNULATED 12/16/10 A GREAT BIRTHDAY GIFT!
www.caringbridge.org/mn/mitchelljohncragg
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11-08-2007, 02:07 PM
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Senior Member
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Join Date: Jul 2007
Location: Vienna, VA
Posts: 2,227
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You have a lot going on right now that is for sure. I hope the little guy feels better soon a lot of positive thoughts and prayers going your way
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps
https://www.babiesonline.com/babies/c/cedric1/
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11-08-2007, 02:18 PM
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Senior Member
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Join Date: Mar 2002
Location: Moore, OK
Posts: 6,010
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The first sicknesses are the worst. Why does the ped want him in ER rather than the office? I hate the ER except as a last resort! You will eventually adjust to the "new normal" but I remember how hard it was in the beginning. Well, even sometimes now on occasion it is hard (like when we need a sitter-haha). Anyway hang in there and i'llsend all sorts of good thoughts your way. 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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11-08-2007, 02:44 PM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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Poor Jacob, and poor you and dh! Sending lots of healing vibes across the pond
Julie
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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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11-08-2007, 03:10 PM
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Mentor
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Join Date: Jan 2005
Location: Glasgow, Scotland
Posts: 4,109
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Hope your wee man feels better soon. It's very draining for the whole family when illness drags on. The stress of all those missed work days is hard too. I just keep telling myself that I'm dealing with more important issues in an attempt to try and maintain perspective. Easier said than done though. I hope everything eases up soon. 
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Kate,
Mum to:
Angus 27/6/04-24/11/10 My star of a boy who was vent and O2 dependent 24/7. One of the loveliest kids you could ever have met.
Pics and vids
Blog
Juliet 28/9/99 perfectly healthy and beautiful
Alasdair 28/9/10 Delightful, easy-going boy
I'm a 'dawk'
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11-08-2007, 07:38 PM
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Senior Member
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Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
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Sending prayers and hugs your way. I hope that Jacob recovers soon and this is his only cold. 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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11-09-2007, 09:51 AM
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Senior Member
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Join Date: Nov 2004
Location: Sarnia, Ontario, Canada
Posts: 1,852
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Ugh. Here's hoping that JAocb is better soon!!! I'm thinking of you guys!
Annette
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Annette, mom to Ashley born May 13/03, pfeiffer syndrome type 2, cloverleaf skull, g-tube, fundo, shunt, dev. delay, seizures, untreatable central apnea. Decanned September 3/09!!! Also mom to Mitchell born Feb 27/08, perfectly healthy. They've made my life complete.

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11-09-2007, 10:52 AM
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Senior Member
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Join Date: Apr 2007
Location: NJ
Posts: 2,549
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Hang in there Kim. I feel much the same way when Kate is sick. It's like an enormous slap in the face, and makes you realize things aren't normal. Still, I guess you learn to live with what degree of normalcy you can.
I hope Jacob feels better soon.
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Angela - mom to Zach 14, Jake 12, Nick 9, & Kate 9/28/06 Pierre Robin Sequence, Stickler Syndrome, decannulated July 4, 2008 -- Kate's blog http://pieceofkateb.blogspot.com/
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11-11-2007, 02:22 PM
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Senior Member
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Join Date: Jul 2005
Location: VA.
Posts: 3,664
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I hope that Jacob gets well real soon, you poor guys must be exhausted.
kathy
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