Pediatric Tracheostomy Home Care Guide at Amazon.com


Go Back   Aaron's Tracheostomy Message Board > Pediatric Tracheostomies

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.

Reply
 
Thread Tools Display Modes
  #1  
Old 12-11-2008, 10:37 AM
hannahysabelle's Avatar
hannahysabelle hannahysabelle is offline
Junior Member
 
Join Date: Nov 2008
Location: Philippines
Posts: 95
Default Hello, everyone!

My name is Joan. My daughter, Hannah Ysabelle, is turning 16 months-old on Dec 14th. She is diagnosed with Congenital Central Hypoventilation Syndrome (CCHS). She is trached and vented during her sleep/nap times...

We stayed in the hospital for the 1st 9 months of her life.

I've been wanting to join this group since last year but found no time because we we became so very busy taking care of Hannah and raising funds to pay for her hospital bill, sustain her daily medical needs, and now..we have an ongoing fundraising to be able to buy her own ventilator, etc.

I am from Philippines, by the way...and here in our country, we have no insurance to support the needs of our baby. meaning, we have to pay for everything. (which makes it way difficult for us)

but like you guys, we are happy to have Hannah in our lives. and we will do just anything and everything to keep her breathing and have the quality of life she deserves.

i am so happy to have finally joined this friendly forum!
i am sure i'd be learning so much! and i do hope i can also share as much.

thank you so much in advance for all your help! =)
and we're wishing that all our children be healthy and happy! =)

thank you!
-joan
Reply With Quote
  #2  
Old 12-11-2008, 12:49 PM
cbissell's Avatar
cbissell cbissell is offline
Administrator
 
Join Date: Feb 2002
Location: Grafton, MA
Posts: 2,063
Smile Welcome

Welcome to the group Joan. I'm always interested in hearing the perspective of parents in other countries.
I can't imagine managing without insurance. That must be very tough on top of the day-to-day challenges of caring for a medically fragile child.
__________________
Cindy - Mom to Aaron (age 20), trached for 4 years, subglottic stenosis, ADHD, learning disability, former 26 week preemie and identical twin to Eric (age 20), spastic quad CP, moderate MR, seizure disorder; Anthony (age 21), spastic quad CP, g-tube, seizure disorder, cortical vision impairment, profound MR; and Natasha (age 7) CP, cortical blindness, seizure disorder, profound MR, shunt, g-tube.



Home Page: http://www.bissells.com
Reply With Quote
  #3  
Old 12-11-2008, 01:45 PM
haltec's Avatar
haltec haltec is offline
Member
 
Join Date: Oct 2007
Location: Cincinnati
Posts: 992
Send a message via AIM to haltec
Default

Welcome!
This is a great site for sharing information and making friends!
I can't imagine not having insurance - that's crazy. It must be so difficult.

I look forward to getting to know you and hearing more about Hannah.
__________________
Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008).
Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving.
Decannulated on 7-16-2008!
Reply With Quote
  #4  
Old 12-11-2008, 01:46 PM
JWorthington's Avatar
JWorthington JWorthington is offline
Senior Member
 
Join Date: Dec 2004
Location: England
Posts: 10,932
Default

Welcome Joan, looking forward to getting to know you. How awful that you have no health cover available to you, things must be so hard. We are lucky to have a National Health Service in the uk that covers most things. We do have extra insurance for Sam because there are some things which take an eternity on the NHS, but I am so relieved we don't have the added pressures that most of you have

Julie x
__________________

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
Reply With Quote
  #5  
Old 12-11-2008, 10:40 PM
alizesmom's Avatar
alizesmom alizesmom is offline
Senior Member
 
Join Date: May 2007
Location: Cochranton, PA
Posts: 4,872
Default

Hi Joan and welcome. I am looking forward to getting to know you and Hannah. 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.

Reply With Quote
  #6  
Old 12-12-2008, 11:02 PM
Hope's Avatar
Hope Hope is offline
Senior Member
 
Join Date: Jul 2007
Location: Monroe, GA
Posts: 1,434
Default

Hello and welcome, Joan!
Hope
__________________
custodial g-ma to Shelby ~~ premie born 9/28/05 with choanal atresia, trached 12/28/05 -- sub-glottic stenosis due to repeated intubations, decanned 3/10/08

http://s307.photobucket.com/albums/n...t=4acb482c.pbw
Reply With Quote
  #7  
Old 12-13-2008, 10:25 PM
My little figther's Avatar
My little figther My little figther is offline
Senior Member
 
Join Date: Jul 2007
Location: Vienna, VA
Posts: 2,227
Send a message via AIM to My little figther Send a message via Yahoo to My little figther
Default

Welcome! It is already complicated with an insurance I can't imagine what you are going through just to get what you need for Hannah's care but having her home must feel like a little victory by itself
Michelle
__________________
Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps
https://www.babiesonline.com/babies/c/cedric1/
Reply With Quote
  #8  
Old 12-15-2008, 03:22 PM
gabrielsmom gabrielsmom is offline
Junior Member
 
Join Date: Dec 2008
Location: Cleveland, OH
Posts: 68
Default

Welcome, can't wait to see pics!
__________________
Linette...Mommy to Gabriel 5/10/06 He was a 32 weeker and has Downs Syndrome, Subglottic Stenosis, tracheomalacia, mickey button and choanal atresia (repaired). Trached at 1 month.

Reply With Quote
  #9  
Old 12-15-2008, 08:17 PM
T-bone's Avatar
T-bone T-bone is offline
Mentor
 
Join Date: Aug 2005
Location: Canada
Posts: 3,715
Send a message via AIM to T-bone
Default

HI there and welcome to the site. My daughter is 7 and has the same condition. She is trached and vented at night as well. We look forward to getting to know you and your daughter.

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.
Reply With Quote
  #10  
Old 12-16-2008, 03:42 AM
hannahysabelle's Avatar
hannahysabelle hannahysabelle is offline
Junior Member
 
Join Date: Nov 2008
Location: Philippines
Posts: 95
Default

Thank you so much for the warm welcome. I am very happy meeting new friends...and i hope to get to know you better.
am still trying to figure out how to put picture of hannah with my signature and include our baby Hannah's website's url...but for the meantime, you may see our Hannah's pics by visiting her multiply site.

http://hannahysabelle.multiply.com

thanks and talk to you more soon!
take care.

from our family to yours, a very Merry Christmas and Happy New Year! =)

-joan
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off


All times are GMT -5. The time now is 12:55 AM.


Disclaimer: The information and resources on Aaron's Tracheostomy Page, Aaron's Tracheostomy Message Boards and the Trachties Listserv are for educational purposes only. This web site and its resources are not engaged in rendering medical, pharmaceutical nor therapeutic advice or professional services. The information provided through these pages, message boards and listserv or any links from this web site should not be used as a substitute for professional advice by qualified doctors and/or therapists.

Powered by vBulletin® Version 3.6.8
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.