View Full Version : Need some Pixie Dust for Hayden
02-23-2008, 11:58 AM
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.
02-23-2008, 12:22 PM
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!
02-23-2008, 12:33 PM
:pixie: :pixie: :pixie: for Hayden!
02-23-2008, 12:38 PM
:pixie:Sounds like you have one tough little guy on your hands. God's blessings to you and your family.
02-23-2008, 12:41 PM
Prayers coming to you all.
02-23-2008, 12:48 PM
Here's lots of :pixie::pixie:, good thoughts and prayers for Hayden and his family!
02-23-2008, 12:51 PM
:pixie::pixie:lots of pixie dust and prayers coming your way for you and your DW and precious lil Hayden
Prayers for Hayden and for his mom and dad headed out.:thumbsup:
I pray things will go well for Hayden and the rest of you, this week and into the future. :heart:
02-23-2008, 01:41 PM
Many, many more prayers and :pixie: dust for Hayden. I understand your concern, I'll be thinking of you guys!
baby minnie's mommy
02-23-2008, 01:59 PM
Prayer and :pixie: for you all and Hayden!
02-23-2008, 02:23 PM
Kyle, lots of prayers and :pixie: for all of you and Hayden!
02-23-2008, 02:50 PM
Kyle, continued :pixie: for Hayden, you and your DW!
02-23-2008, 03:10 PM
Prayers & :pixie: 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.
02-23-2008, 03:36 PM
Many prayers and :pixie: coming to you!
02-23-2008, 04:47 PM
We too will keep you all in our prayers this week as you travel and have the procedure done.
02-23-2008, 05:59 PM
You're all in my thoughts and prayers! God bless you! Sending some :grouphug: and some :pixie::pixie::pixie: your way! Keep us updated.
02-23-2008, 06:22 PM
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.
02-23-2008, 06:25 PM
More prayers and :pixie: for Hayden!
02-23-2008, 07:24 PM
Kyle, I am sending as much :pixie::pixie::pixie::pixie: 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!!
02-23-2008, 11:32 PM
Prayers and Pixie Dust to all of you.
02-24-2008, 12:45 PM
Please keep us posted when you get a chance!
My son was just in the hospital here in Chicago for a "23 hour" admission after having 2 tendons lengthened in his left leg. He has epilepsy, so any kind of anesthesia is also scary for us. Everything went smoothly but it was comforting to us to have his medical team close at hand while he recovered from the procedure.
You will be in good hands at the hospital!
02-25-2008, 07:39 AM
Here's some pixie dust and some prayers for Hayden. God Bless Hayden and his family.
02-29-2008, 07:33 PM
02-29-2008, 08:16 PM
Glad to hear that Hayden came through the procedure with flying colors. :thumbsup:
02-29-2008, 10:06 PM
Glad to hear that it went well.:thumbsup:
03-01-2008, 06:15 PM
I'm sorry I missed getting my Pixie Dust in before Hayden's procedure.I'm so glad to hear it went well.Sending Pixie Dust and Positive Thoughts your way.:pixie::pixie::pixie::pixie::pixie:
03-04-2008, 01:02 AM
I'm also sorry I missed sending some pixie dust before. Here's some for his speedy recovery :pixie::pixie::pixie:
03-04-2008, 09:43 AM
:thumbsup: Kyle, I'm so glad to hear Hayden did so well... sending pixie dust for a speedy recovery and that he'll continue to do well! :thumbsup:
03-04-2008, 10:17 AM
I'm sorry I missed sending pixie dust before the procedure, but I'm happy everything worked out and Hayden is recovery well!!! :mickey:
03-04-2008, 11:14 PM
Here is some more post procedure pixie dust and lots of love and prayers for the future!:tink::tink::tink:
03-05-2008, 01:28 PM
So glad to hear things went well. Our continued prayers and :pixie: for Hayden (and for his terrific mom and dad).
03-06-2008, 06:34 AM
I've not been on so I missed this. Good thing to because I started crying when I was reading it and I'm grateful I didn't have to wait around to hear how he is doing.
Praying for you still. Give kisses to Hayden for me.
03-08-2008, 01:26 PM
Our daughter Rachel has a Mic-key tube as well. all of her nutrition is given thru it. we love it! it is so easy to change at home! we used to also have a peg type button, but like this one so much better!!!
hugs and kisses to Hayden!!!!
03-10-2008, 01:51 PM
prayers and pixie dust for your whole family. I know it's not easy when your little one is sick you feel so helpless. I'm sending some extra pixie dust for hayden.
03-10-2008, 02:59 PM
So happy to hear that he is doing well. Hayden and your family are always in our prayers.
03-10-2008, 09:55 PM
wishing tons of pixie dust :pixie::pixie::pixie::pixie::pixie::pixie::pixie:: pixie:
don't know if that's a ton but its got to be close have fun in disney and enjoy the magic
well i had a lot more pixie dust but they only allow 8 so just think what about 100 look like boy did i have a lot to erase
03-11-2008, 12:57 AM
I am so happy that he did well!!!!
Pixie Dust to all of you! (I know from experience that the caregivers need just as much love and support as the patient)!!!!!!!!
03-11-2008, 07:47 PM
Thank you all so much for all your support, love, pixie dust, thoughts, and prayers. Hayden is doing well just still waiting for the big push and that little plug to make it's way out. Has kinda made him puny, but I guess I would too.
Once again thank you all so much! Hayden sends his love.
03-11-2008, 08:04 PM
So glad to hear it still saying prayers hopeing for speedy full recovery and i'm sure can't wait for that trip to disney
03-26-2008, 01:25 AM
Glad to hear Hayden's doing better.
Here is some pixie dust because I'm sure that you could use some everyday.
03-26-2008, 02:17 AM
Im a little late on this but I send my prayers & pixie dust your way too for his recovery.
03-26-2008, 09:15 AM
Thank you everybody so much for all the prayers and pixie dust. You can never have to much. Hayden is doing well that plastic piece is still rolling around in his tummy, but the doctors aren't worried so we won't be either it will eventually come out on it's own. Hayden is getting over a sinus infection and combined with allergies he is still a little puny, but I told him he has 46 more days to get better. :D
Thank you all once again.
03-26-2008, 04:50 PM
Glad to hear he's doing well (besides the cold/allergies). :mickey::thumbsup::)
03-26-2008, 10:58 PM
Been a while since I checked in. Definitely keeping your family in my prayers. :sun:
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