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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
04-25-2010, 04:52 AM
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Not the News we were expecting...
 ...Dylan had an MLB & grommets done Friday as a Daycase as no beds available...Anyway after the good news we got last Nov about the reconstruction been a success we thought our next stage would be to work towards Decan in a few months...well surprise surprise we were totally wrong! Dylan has some scarring on the reconstruction site which will be lasered in a few months which means his airway should be fine then..but then we were told the reason why he was always difficult to Intubate (We always thought it was because of his grade 3 subglottic stenosis)..he has a Anterior Larynx grade 3...so they feel its safer to leave trachi in for a few more years just incase more surgery is needed..they hope as he grows it may downgrade a level..i must admit i was Disappointed but sure what can we do..Poor Dylan also took a while to come around after theatre so the nurses in recovery room asked me to go in & see what i thought of him as his sats were low & heart rate high & very groggy up to two hours after which is not usual for him..it was strange been in there as parents are not usually allowed in there & all the other kids were crying & screaming for their mammys...
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 Marie-mum to 3 boys -Ben(May 05) Marc(May 11) & Dylan(Sept 07)-Tetralogy of Fallot(repair may 08),Trached due to severe subglottic stenosis(July 08),G-tube(oct 08),Nissens(Feb 09),First Stage LTR(Aug 09),CTR(Nov 11).
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#2
04-25-2010, 07:31 AM
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ugh-sorry you didn't hear what you wanted to hear.
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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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#4
04-25-2010, 03:31 PM
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That must have been a real kick in the teeth.
It's definitely one of those "rug out from under you" appts. Wish I could give you a hug and a large glass of wine.
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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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#5
04-25-2010, 04:22 PM
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You know how sorry I am Marie, hugs heading across the Irish Sea xx
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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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#6
04-26-2010, 09:17 PM
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That's a tough blow. I'm glad there is hope. The years go by so fast, but somehow not fast enough when you are counting on decannulation. Going into the recovery room sounds dreadful. I had no idea all the kids might be awake crying for their moms. That's an image I don't like to consider.
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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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#7
04-26-2010, 10:29 PM
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Ahhh, I am so sorry to hear that.
Hopefully growth will be the key for him.
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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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#8
04-27-2010, 11:45 AM
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Thanks a million to everyone for all your support...im hoping as the summer arrives and the evenings are longer we will get out a bit more so i can clear the head and just get back into the routine without thinking about it all too much...i am dreading the winters again as Dylan gets sick alot and as Ben is starting school in sept it will be tough getting him to school if Dylans anyway sick..but sure we will cross that bridge when it comes..
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Marie-mum to 3 boys -Ben(May 05) Marc(May 11) & Dylan(Sept 07)-Tetralogy of Fallot(repair may 08),Trached due to severe subglottic stenosis(July 08),G-tube(oct 08),Nissens(Feb 09),First Stage LTR(Aug 09),CTR(Nov 11).
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#9
04-27-2010, 01:59 PM
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Sorry you had such disappointing news. I agree about the recovery room being not a nice place, our hospital always lets parents in as soon as the kids are back from surgery; although I wouldnt want it any other way- Joseph freaks if he wakes up and I am not sitting there waiting. (and being a vent patient, we get admitted to surgery from recovery room, so I sit in there with him for hours before he gets back into the operating room)
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 Lynn, mother of Brooke(19), Haely(17), Sydney(12)Dominic(1) and Joseph(DOB 11/03/06)DX:Jeune's Syndrome:trach 12/12/06:vent depend: Sprinting 12 Hrs a day!!!!EE:GERD:Hydronephrosis:Situs Inversus:Aortic Stenosis:Myocardial Hypertrophy:Kidney Transplant 08/18/10 http://www.caringbridge.org/visit/josephmollica
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