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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. |

05-27-2008, 10:45 AM
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Senior Member
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Join Date: Dec 2004
Location: England
Posts: 10,932
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More surgery!
I took Sam to see the urologist today and he is far from happy with his hypospadias repair. He has already had a 2 stage procedure, which is usually all that is required, but our boy never does things by halves! This man performed the first stage, but did not do the second stage, his second in command did, because unfortunately Sam's urologist had a heart attack. Sam still does not pee from the tip of his penis, he tends to pee just underneath and off the the right somewhat. The urologist said in a 'typical' kid he would not be happy to leave it like that, even though Sam has no problems peeing, he just can't do it standing up! and he said he did not feel it was fair not to make it as perfect as possible just because Sam had problems. so the next round is scheduled for September, it's not a pleasant surgery and Sam usually needs to wear a urinary catheter for a week post-op which is a nightmare. Hopefully, this will fix it, but he did say he might need to do a 4th procedure.....  Poor Sam, he haemorraghed following the first stage and needed a blood transfusion. I am not looking forward to this oen bit.
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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05-27-2008, 11:08 AM
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Senior Member
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Join Date: Apr 2008
Location: Virginia
Posts: 2,664
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Ow, Julie, what rotten luck! I'm sorry. I sure hope this next surgery is "IT" for Sam in such an owie spot! Who wants this???!!!! Poor Sam and Julie. Here is a  .
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Karin
Alex's Mom
Alex born 6/19/2007, PRS, Trached and GTube at 3 weeks, palate repaired 12/20/2007, failed decannulation 5/7/08 due to undiagnosed suprastomal collapse, jaw distraction 9/9/08 (insertion) to 10/30/08 (removal). Single Stage LTP 2/17/09 and now member of the Naked Neck Club. Need a laugh? Check out http://itsallgoodtoday.blogspot.com/
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05-27-2008, 11:34 AM
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Senior Member
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Join Date: Feb 2007
Location: Seattle WA
Posts: 6,523
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Ouch! That's not the kind of operation you want to have to redo. I hope they're able to fix it in September with a minimum of complications. Poor Sam! That does not sound like it'll be fun.
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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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05-27-2008, 11:36 AM
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Senior Member
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Join Date: Jul 2007
Location: Monroe, GA
Posts: 1,434
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Oh, I'm so sorry that y'all are facing this again. I hope this fixes the problem for good! Poor baby and mommy!
Hope
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05-27-2008, 11:48 AM
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Member
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Join Date: Feb 2008
Location: Alabama
Posts: 653
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Poor Sam. And poor Julie!! We went through hypospadias repair with our older son and although his was a pretty easy fix, it was still a hard recovery for him (and us). I really like how the urologist wants the fix to be perfect inspite of the other "issues" Sam has. That's a very caring doctor to me. Good luck.
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~Caty
mom to Bo (4/05) and Nate (3/07 ~trached 2/14/08 for resp. failure secondary to congenital hypotonia~vented while asleep)
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05-27-2008, 11:58 AM
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Senior Member
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Join Date: Dec 2003
Location: Ohio
Posts: 2,990
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Oh Julie.
Poor Sam! Poor Mommy! I think I remember the last surgery. Oh...I know he had some complications. Many hugs and prayers across the pond that this surgery is successful and the recovery is as easy as can be!
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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05-27-2008, 12:02 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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Oh poor Sam. I know it is going to be painful but on the other hand I am glad his urologist wants to make it as perfect as possible even if Sam has other issues. I am sending a lot of positives thoughts 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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05-27-2008, 12:35 PM
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Member
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Join Date: Nov 2007
Location: Boston
Posts: 257
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Oh... this sounds so unpleasant, poor Sam - hopefully this is only for the better and this surgery will be the end of it! Many 
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 Mom to Michael, 08/07/07, PRS
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05-27-2008, 02:12 PM
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Mentor
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Join Date: Jan 2005
Location: Glasgow, Scotland
Posts: 4,109
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Julie,  how bloody awful! I remember all the stress and trauma of the last time for you and Sam.  I really hope they take some precautions, if they can be taken, because of what happened last time. I can understand why you're so anxious about getting anything more done.
Do you feel it's worth it? The doctor has his ideas, but you and Sam are the ones who've got to live with it.
Whatever you decide, I hope it all turns out for the best, and here's to NOT needing a 4th procedure!
Lots of love,
Kate
XXXX
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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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05-27-2008, 03:17 PM
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Member
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Join Date: Jun 2005
Location: Delaware
Posts: 875
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poor Sam---I also remember what a hard time with the bleeding last time...but I also think it is great that he has a surgeon who wants things to be done "right."
Hopefully things go much better this time.
Sebby
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Menna born 1/19/04 former 24 weeker, trach 4/16/04 for tracheomalacia, developed subglottic stenosis. CTR 7/27/05--double stage LTP 3/13/ 2008.. Decan October '08....healthy happy crazy kid!!
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