Wednesday, December 7, 2011

Kids with Vents Facebook Group

We started out as a support group on Yahoo Groups, and we recently added a Kids with Vents Facebook group as a convenience to our families.  The Facebook group is very popular and we already have over 350 members!  If your child uses a ventilator or Bipap/AVAPS, you are welcome to join us!  Teens and young adults on a vent (or Bipap/AVAPS) from a childhood condition or injury are also welcome!  To join the Kids with Vents Yahoo group, just click on the link above the slide show.  To be added to the Kids with Vents Facebook Group, go to: and click on "Join Group."  Hope to see you there!

Friday, March 11, 2011

With Every Breath I Take

Testify To Love - Avalon Lyrics

All the colors of the rainbow
All of voices of the wind
Every dream that reaches out
That reaches out to find where love begins
Every word of every story
Every star in every sky
Every corner of creation lives to testify
For as long as I shall live
I will testify to love
I'll be a whitness in the silences when words are not enough

With every breath I take I will give thanks to God above
For as long as I shall live
I will testify to love

From the mountains to the valleys
From the rivers to the sea
Every hand that reaches out
Every hand that reaches out to offer peace
Every simple act of mercy
Every step to kingdom come
All the Hope in every heart will speak what love has done.

I love this song - especially the middle part. Sometimes I wonder why God allowed me to be born with CCHS, but when I hear "With every breath I take I will give thanks to God above", I realize it doesn't matter if those breaths come from a ventilator. I am God's original creation, he formed my every cell, I am His child, and I am perfect the way I am!

Sunday, October 17, 2010

Heartmade Blessings

"Heartmade Blessings is a world-wide group of volunteers dedicated to providing hand-crafted items to those people suffering a loss, tragedy, or going through a rough time that need to be reminded of the simple fact that people care.  The organization was founded in March, 2001.  Heartmade Blessings come from all the wonderful people who donate squares for afghans and bearghans. They are also made possible through the efforts of the warm, caring people who donate their time in assembling and organizing the distribution of these items to those in need. We truly believe these people are nothing short of a "blessing" themselves."

I recently received one of Heartmade Blessings' beautiful Comfortghans while recovering from aspiration pneumonia.  It was made just as my mom had requested, with my favorite colors and images (see photos below), and I absolutely LOVE it!  Thank you, thank you, thank you to all the dedicated volunteers who made my wonderful Comfortghan - you truly have been a blessing to me! - Love, Deborah

My Beautiful Comfortghan
Warm and Toasty
Each square and the tote bag comes with a tag from the volunteer who made it.  Thank you to all those who made my Comfortghan!

If you would like to request a comfort afghan or a bearghan please email Heartmade Blessings at and provide the following information:

1. Your first and last name and e-address.
2.  Please indicate if you are requesting a Comfort Afghan, Operation Purple Heart afghan or Bearghan.  Bearghans are sent for children ages infant to approximately 6-years of age.  Children age three to six receive a smaller sized Comfort Afghan.
3. Recipient's first and last name.  
4. Verified mailing address the assembler will be sending the comfort afghan to.
5. Reason for the request (i.e., illness, bereavement, etc.).
All information provided will kept confidential and will not be shared with anyone outside of Heartmade Blessings.

Sunday, September 26, 2010

A Meeting of Friends!

Colton and Deborah
Lucy, one of our Mom moderators, and her husband Matt, brought Colton out to Ohio from North Carolina for some very specialized autonomic testing last week.  It just happened to be at the same Children's hospital that I take Deborah to.  We talked for several weeks about meeting, and then it almost didn't happen between Colton's hospital schedule and Deborah having a mild aspiration pneumonia!  However, we finally did get to meet for a little while in the lobby, and we got some great pictures too!

Lucy, Matt, and Colton

Colton and Deborah Again

Group Photo:
Matt, Colton, Lucy, Deborah, and Patricia

Friday, September 17, 2010

Carmen's Story

My name is Liz, and my daughter Carmen is four years old.  Carmen was diagnosed with late-onset CCHS (Congenital Central Hypoventilation Syndrome) when she was 16 months old.

We live in Tennessee, but traveled to San Fransisco in December 2007 to visit family.  Carmen had a cold and was very congested.  In the early morning, after Christmas Day, I woke Carmen to try to get her to cough up her secretions.  She aspirated and went limp in my arms.  My brother-in-law is an ER physician, and he was resuscitating Carmen while my sister called 911.

Carmen was admitted to UCSF Children's Hospital, diagnosed with RSV, and was put on a ventilator.  She failed two extubations, and the doctors were telling us that something else was wrong.  Carmen had every test imaginable (X-rays, MRI, EEG, echocardiogram, and a sleep study, etc.) to rule things out.  The sleep study showed that she was retaining CO2 only while she was asleep.  The doctors began to prepare us for the possibility of Carmen having CCHS, which is a very rare genetic disorder.  She was trached on January 17, 2008, and a week later we learned that Carmen does have a PHOX2B mutation of 20/25.

After 33 days in the PICU at UCSF, we took a medical flight to Vanderbilt Medical Center.  We were there for about a week to learn about trach care and the ventilator, before returning home.  We have never had home nursing care for Carmen, because we have not qualified for any assistance, and my husband's insurance (BCBS) does not cover private nursing services.  I quit my job so I could care for Carmen full time.

Carmen is an only child.  She attends a community based inclusion preschool so she can interact with her peers.  She does not have any developmental delays, so our public school system does not think she need to be in school yet.  They will only begin providing nursing services at school once she begins Kindergarten.  So, I go to school with her to provide her trach care needs and to hook up her ventilator when she naps.  Carmen is strong-willed, bright, sassy, and fun!  Despite her trach, she can be extremely loud, even without her speaking valve.  We look forward to the day she can be decannulated, and either be ventilated via Bipap or with a diaphragmatic pacemaker.

Thanks for reading our story!