|

| 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. |

04-26-2008, 09:51 PM
|
 |
Senior Member
|
|
Join Date: Dec 2006
Location: Whitby, Ontario
Posts: 4,063
|
|
Parker is still chugging along.
Last I posted here Parker had been re-intubated after coding 72 hours post extubation. That was interesting. Of course, his scope revealed nothing other than a totally normal looking graft site.
Their best guess is that there were a whole set of circumstances that came together to cause the episode. Dr. Rutter (who chatted with us after instead of Dr. Cotton) said that they have seen this before, where someone crashes and then after a few more days on the vent they are totally fine. Of course, because there has been such a controversy about the functionality of Parker's vocal cords, they didn't rule out the possibility there might be some intermittant function. As we get further away from the episode and we've seen how Parker has reacted to being mad, etc. I think we are all pretty satisfied that his vocal cords are fine and that the episode was isolated.
Plan now is for a scope on Tuesday and although they won't "commit" to anything, they've indicated that if things continue to go well and the scope looks good they will release us for home with a return visit two weeks later which will be conveniently located at the exact same time we are slated to move! LOL. Remind me when I got on the crazy train again?
I'm amazed at how quickly he has regained his strength and balance. He's definitely not there yet, but this kid has a will to match his red hair, that is for darn sure. He is also nosy as all get out. We've met every kid on the floor because Parker just keeps going up to everyone.
Thanks again to all of you who have sent encouraging messages, especially after the "episode."
Suzanne
|

04-26-2008, 10:15 PM
|
 |
Senior Member
|
|
Join Date: Jul 2007
Location: Monroe, GA
Posts: 1,434
|
|
So glad to hear how Parker is doing, had often wondered. Glad he is back on track again! I'm moving, too, in about less than a month and the thought freaks me out. Don't even want to THINK about how you're going to handle it on top of all this...
Hope
|

04-26-2008, 11:41 PM
|
 |
Senior Member
|
|
Join Date: Jan 2007
Location: Colorado
Posts: 3,979
|
|
I have heard of people buying houses remotely, but never from the hospital!! You are VERY daring!!  If I did that we would end up w/ a 2 story and then I would end up w/ knee replacement by the time I am 4o! LOL
Glad things are going better... been thinking about you guys...
Glad to hear that Parker doesn't need the night fedds... that just royally messes w/ the kids want to be hungry.
Hope you guys are reunited soon w/ the rest of your family.
__________________
Dawn

former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 - 
Follow decan at: http://sleepy-dogs.blogspot.com/
|

04-27-2008, 02:51 AM
|
 |
Senior Member
|
|
Join Date: Feb 2007
Location: Seattle WA
Posts: 6,493
|
|
I'm glad the episodes have not recurred and that things are going well. I hope things go well with the move and that your return trip isn't at the same time. You're having a really busy, crazy time right now. I hope you're taking good care of yourself and that you don't crash when its over. 
__________________
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/
|

04-27-2008, 07:00 AM
|
 |
Mentor
|
|
Join Date: Aug 2005
Location: Canada
Posts: 4,648
|
|
So glad to hear he is getting stronger and stronger.
Here's to hoping it was an isolated event.
Our children seem to have a knack for scaring the beejeebres out of us.
Tess
__________________
Tess-mom to Abigail 9 yrs old. DX Central Congenital Hypoventilation Syndrome and has a pace maker. Abby was decannulated April 15, 2010. She now sleeps with a V-pap machine and mask. Also mom to a fiesty red head named Olivia who is 6. I am the happiest mommy right now, all is good.
|

04-27-2008, 08:41 AM
|
 |
Senior Member
|
|
Join Date: Dec 2006
Location: Whitby, Ontario
Posts: 4,063
|
|
Quote:
Originally Posted by drct1245
I have heard of people buying houses remotely, but never from the hospital!! You are VERY daring!!
.
|
My MIL, whom I love and totally trust, saw the house yesterday and gave me a woman's lowdown on it. She thinks it is great and will be perfect for us. That's good enough for me!
Quote:
Originally Posted by Hope Reese
I'm moving, too, in about less than a month and the thought freaks me out.
|
Moving is always stressful. I hope your's goes smoothly!
Quote:
Originally Posted by Ainsley's Mom
I hope you're taking good care of yourself and that you don't crash when its over. 
|
I figure I will sleep the day I pack them all off to college. Let's hope that day does come!
Quote:
Originally Posted by T-bone
beejeebres
|
So that is how you spell that word. Good to know!
|

04-27-2008, 09:02 AM
|
 |
Senior Member
|
|
Join Date: Apr 2008
Location: Virginia
Posts: 2,664
|
|
We had scheduled a kitchen remodel before Alex was born. It was supposed to be when he was two months old, and we were going to drive to PA to help care for my Mom who would be recovering from knee surgery. We thought the baby would be a nice distraction.
As it turns out, that was the week Alex came home, so I had no dishwasher, no kitchen sink, no stove, and only a microwave.  One week later, my Mom got a lift down to help. Interestingly, she said the best PT in the world for knee replacement surgery is scrambling to get the suction machine, because breathing is more important than a little knee pain!
So, we thank our lucky stars that our church (actually, a new church we'd only been to a few times) really stepped up to bring us food. They brought us dinner to the house every day after Alex moved to the pedes ward, and continued until our water was installed. They'd leave it on the front step, and we'd go get it as we had time. They even respected that I was on a dairy and soy free diet because I was pumping, and we had reason to fear that Alex had severe food allergies. (We still don't know for sure, because I won't let him try until he's stronger. He's got enough to worry about.)
So, it wasn't a house move, but it was Murphy's Law in action. Too bad you aren't moving to Virginia, or we'd come over to help you unpack.
Good luck!
__________________
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/
|

04-27-2008, 09:12 AM
|
|
Member
|
|
Join Date: Nov 2007
Location: Boston
Posts: 257
|
|
Glad things seem to get better. I keep my fingers crossed for Parker - he is a character, that's for sure!  So good he is sociable!
__________________
 Mom to Michael, 08/07/07, PRS
|

04-27-2008, 09:33 AM
|
 |
Member
|
|
Join Date: Jan 2008
Location: buffalo
Posts: 881
|
|
so glad all is well,keep it up Parker!......................Angie
__________________
 Ayden 6 yrs,tracheomalacia,G-T,nissen,rare type dwarfism ,resolved pierre robin,bronceomalacia,Single stage LTP May 2008,now decanned!!!  .Ava 2 years www.aydenava.blogspot.com
|

04-27-2008, 01:06 PM
|
 |
Senior Member
|
|
Join Date: May 2007
Location: Cochranton, PA
Posts: 4,870
|
|
Glad Parker is back to being busy. Good luck on getting home and the move. Karen
__________________
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.
|
| Thread Tools |
|
|
| Display Modes |
Linear Mode
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -5. The time now is 09:35 PM.
|