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Need some Pixie Dust for Hayden **UPDATED** (We're Home)
My son Hayden who is now 2yrs and almost 2 months old (sorry but we celebrate every months birthday now, in fact we are celebrating his 28 month old birthday in May at WDW) uses a feeding tube in order to get all his food. The tube he currently has is wearing out, it was only designed to last about six months, but my DW has done such a good job taking care of it it has lasted almost a year so we have to have it replaced.
DW and Hayden's Hospice nurse met with the surgeon on Wednesday and he said it is a simple procedure just deflate the balloon pop the old one out and puta new MIC-ie (yes it is called a mickey button, how cool is that) button in no big deal 15 mins tops. So we drove down to Chapel Hill, NC to have the procedure done, but when we got there DW and I got to talking with the nurse proactitioner and made her realize that it is actually a PEG tube which means it has a hard piece of plastic inside Hayden's tummy about the size of an acorn. They said we have two options they can numb around the site wich is about the size of a pencil and yank it out, or they can actually sedate him and do it as an operational procedure they still have to pull it out but he will be sedated. Needless to say we opted for the sedation although that makes us just as nervous with Hayden's disease he has apnea wich means he stops breathing at times sometimes for up to 30 seconds and then starts again, and any kind of medication you put into a child with Krabbe's disease stays with them for a loooooooong time, so the anasthesa worries us although the procedre won't take that long 15 mins tops.
So now we are going back to Chapel Hill next Thursday to do the procedure and they are going to keep him for 23 hours to make sure he doesn't have any ill effects from the anestisia.
I am confident in the doctors and in the pediatric anestisia team they have, but it is still nerve racking. So any Pixie Dust, Prayes, Good Thoughts you want to throw our way we would be most appreciative. Thank you
Hey everyone we got home Friday after spending the night in Chapel Hill. Hayden came through with flying colors. He has his new Mic-ey button in. The only complication we had was when they went to remove the old tube the small plastic piece in his tummy broke off, but as of this morning it had already passed down to his large intestine so now we are just waiting for it to go the rest of the way. (That ought to be fun) His doctor's nurses and especially the anestisia team were wonderful. Thank you all for all your thoughts prayers and pixie dust. Talk to you soon.
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I fully understand your concern and I am sending you all the good wishes, prayers and pixie dust I can muster. Good luck and God Bless Hayden and his family!
first visIt: November 1973
last visit: December, 2012
next planned visit: October, 2013 with friends
resident Fairy Godmother
hearts are warmed when friends meet
see ya real soon
~*~*~*disneydeb*~*~*~
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Kelly
4/98 Offsite
11/03 Make a Wish Trip
8/05, 4/07, 4/08, 4/09, 4/11, 4/12, 4/13, 4.14
Sheraton Vistana Resort
11/07 Hilton Grand Vacations Sea World
Next Trip: 04/15 Sheraton Vistana
Give the Gift of Life; Be an Organ Donor!!
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Sounds like you have one tough little guy on your hands. God's blessings to you and your family.
~~~~~~Stephanie~~~~~~
December 3-7, 2010 Poly LVC
April 13-18, 2009 Poly LVC
Feb 8-11, 2008 Poly LVC
March 07 - Poly LVC
December 06 - Poly LVC
October 05 - CR
June 04 - Grosvenors
March 02 - Off Site
November 00 - CBR
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Prayers coming to you all.
Cruises:
Feb 12-16, 2012 (Dream), Oct 20-27, 2012 (Fantasy Eastern), Sept 8-12, 2013 (Dream) Jan 20-24, 2014 (Magic) Sept 14-18, 2015 (Dream) Sept 25-29, 2017 (Dream) Sept 22-29, 2018 (Fantasy Eastern) Sept 23-27, 2019 (Dream)
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Here's lots of , good thoughts and prayers for Hayden and his family!
DL: 92, 93, 94, 96, 97, 2000, 2006
DLRP: 98, 99, 2000, 01, 02, 03, 04, 05, 06, 07, 08, 09 WDW: 00, 02, 03, 04, 05: POR, PCR 06: YCR, OKW 07: P0R, ASMo, OKW , 08: POR, POP
09: WDW and DCL Aug 15 to Sept 12 (can't beat free dining), CBR, OKW
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Prayers for Hayden and for his mom and dad headed out.
Jeff
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I pray things will go well for Hayden and the rest of you, this week and into the future.
Dec 1977 - my 1st MK visit
1978-1994 - annual 1-day visits from TN OH and PA
1995 - moved to Orlando
1995-today - many many short visits with SP's and AP's
2003-today - taking photos all over WDW
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Many, many more prayers and dust for Hayden. I understand your concern, I'll be thinking of you guys!
Melissa
4/87 offsite, 3/05 AKL, 10/06 WL, 3/08 GF, 1/09 WL, 3/09 Poly, 10/09 SSR, 1/10 AKV, 10/10 BLT, 12/10 AKV, 2/11 Poly, 5/11 BCV, 10/11 BLT, 12/11 WL, 5/12 1st Cruise on the Dream & BWV, 10/12 BLT!
"...That's the real trouble with the world, too many people grow up." Walt Disney
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Prayer and for you all and Hayden!
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Kyle, lots of prayers and for all of you and Hayden!
Chris, aka Strmchsr
INTERCOT Staff: Vacation Planning, Guests with Special Needs, and Weather Guru
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Kyle, continued for Hayden, you and your DW!
Ellen
INTERCOT Staff: Dining, Disney Cruise Line, Guests with Special Needs
Next up:
Christmas with the Mouse
President's Week 2013
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Prayers & to all of you. As I'm sure you know, you're in great hands there at UNC. We spent about 12-15 weeks there on 7th floor of childrens hosp. about 3 years ago and our boys were treated like royalty. If they had to have anything else done major, I would go there again.
I know it's not much consolation, but I'm familiar with the procedure Hayden is about to have. I have seen several children lately who've had this procedure done and have done well. None with Krabbe's though. I'm sure though that as strong as he is and as strong as you & DW are, especially with the exceptional care you've taken with him, he will do very well. You really will be in great hands there.
Again good luck and I'll say prayers for Hayden and your family.
°O°Amy °O° DVC Member
2011 Dec-Poly with the grandparents--whoo-hoo!!!
2011 June-SSR!!!!!
2008 Aug-Colbey&Gray's Birthday surprise-SSR/OKW
2008 June-SSR
2006 June-Port Orleans Riverside
2004 Easter-CSR
1988 May-Graduation
1982 Offsite
1980 Offsite
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Many prayers and coming to you!
Heather aka ibelieveindisneymagic
INTERCOT Staff
Engaged at the castle!
My Disney Home is POFQ
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We too will keep you all in our prayers this week as you travel and have the procedure done.
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Kyle, as always Hayden and you all are in my prayers, but I'll be sure to get in a few extra for you this week.
KAY
DVC MEMBER - OKW & HHI
First trip to WDW - Dec, 2005
Last visit to Disneyland - 2014
First trip to Disneyland - 1955
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More prayers and for Hayden!
Kathy șoș
LET'S GO BUCS!
Next trip - June '14
Past trips:
6/13, 4/13, 7/12, 7/11, 1/11, 8/10, 7/09, 3/09, 8/08, 8/07, 12/06, 9/05, 7/03, 7/98, 5/96, 8/93, '70's X 2
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Kyle, I am sending as much to Hayden as I can, and to his anesthetists and doctors, too... I am sure things will go fine, but can totally understand your concern, too!! Good luck to you and your little guy on Thursday... you guys will be in our thoughts and prayers!!
Blythe
Past trips -
3x offsite,May 06 CBR,Oct 07 I'cot 10,Dec 08 CBR,Jan 09 ASMu,Oct 09 CBR/AKL,Jan 11 AsMu,Aug 11 CBR, Oct 11 AKL,Oct 12 I'cot 15,Aug 13 CBR,Aug '14 mini AKL trip
Next -
May '17 DL OR June '17 CBR
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