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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
10-24-2007, 05:51 PM
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Nae luck so far.....
Well, we found out today that the surgeons at our local kid's hospital won't do the lateral thoracic expansion op because they haven't done it before. However, they are prepared to give us pre and post-op support, which is something. Now we need to find out if anywhere else in the UK is prepared to try something new, or whether our local health board will provide practical and financial support for Angus to go to Ohio to have the operation there. I have written to Angus' consultant to request a meeting, and to our local health board to see what help we can get there. Something tells me this is gonna take a LONG time. :sigh:
Love, Kate XXX
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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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#2
10-24-2007, 06:10 PM
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Good luck! At least they are willing to do what it takes to fully support you going into and coming out of the surgery.
Suzanne
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Suzanne Mom to: Berkeley (June 2002),Griffin (July 2004), and Parker (November 2006) My family blog: http://www.mylifewithboys.typepad.com Parker's LTP Blog: www.parkersplace.wordpress.com 
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#3
10-24-2007, 07:17 PM
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Isn't patiently waiting in our job description?? 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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#4
10-24-2007, 09:29 PM
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Sorry to hear your news. Hopefully they will pay for you to go to Ohio!
 
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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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#5
10-25-2007, 05:10 AM
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Oh Kate, it sucks that Yorkhill can't do it. I hope you can find somewhere in the uk that does it. I'll see if I can make some enquiries at our children's hospital. It would be a shame to have to travel across the pond if you can get it done here. As Karen so rightly put, you begin to understand why our kids are called 'patients' 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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#6
10-25-2007, 06:35 AM
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I am sorry to hear this. Hope you will find a solution.
Michelle
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#7
10-25-2007, 06:57 AM
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Julie, it would be great if you could mention it at your local hospital - which is it? If the Health board agree to pay, it would be quicker to get it done in the US because we wouldn't have to wait for the surgeons to be trained or anything like that. With the present exchange rate it may well be cheaper for them to cough up for it in the US than have it done here, what do you reckon? Thanks for offering to help.
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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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#8
10-25-2007, 07:35 AM
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I'm sorry this is difficult to figure out. Do you have names of drs in the u.s. that have done this surg. before? let me know if you want me to make any phone calls to the children's hospital around here...Boston is close and they have a great facility.
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Christina mom to Max born 01.19.05 @ 24wks LTR 03/22/2007 LTR 07/15/2008 decannulated, but uses CPAP while sleeping
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#9
10-25-2007, 07:46 AM
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Kate- What does this surgery consist of?
I hope it can be done ASAP. Do they do it at CHOP in Philly? Might cut a couple of hours off your trip. Maybe you can come out during the trach conference!
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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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#10
10-25-2007, 08:55 AM
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Ughh, Kate sorry to hear that!!! What about coming to Canada? I know Sick Kids in Toronto does a lot of out of country surgeries.
Hope you get an answer soon!!!! 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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