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

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!

Hannah's Story

My name is Joan, and I am from Philippines. My daughter, Hannah, who just turned three, has Congenital Central Hypoventilation Syndrome (CCHS.) She has a tracheostomy and uses a ventilator when asleep. During my pregnancy, I didn't suspect any problems until a week before I gave birth. I was diagnosed with polyhydramnios. My OB said I had too much amniotic fluid. I've never heard of such but she told me not to worry. I did worry though, because that was something not normal right? So I Googled what that means and how it affects the baby. From what I read, having polyhydramnios may mean the baby having a congenital problem. Having no history of a congenital problem in either my or my husband's family, I was convinced to just ignore what I read and stay calm. A week later, I gave birth to a full term beautiful baby girl via C-section.


After waking up from sedation, I was expecting to see my baby. Little did I know that while I was asleep, Hannah was already under observation. The doctor then informed us that they needed to transfer Hannah to the NICU. She had pneumonia, had to be intubated, and put on a mechanical ventilator. That day started the saddest nine months of my life. When Hannah was three weeks old, after a number of failed extubations and series of neurological tests, a sleep doctor concluded that Hannah might have what they call CCHS (Congenital Central Hypoventilation Syndrome.) They said that the best option for her to have a tracheostomy tube and stay in the hospital until she become more stable and we were ready to bring her home with all the necessary equipment. She was already 6 months old when the CCHS diagnosis was confirmed. The PHOX2B genetic test is not available in our country and we had to send her blood sample abroad to have it confirmed. We weren't able to do it earlier because the test is very expensive.


It took us 9 long months to prepare for Hannah's homecoming. It was never easy. There was so much to be done, and a huge amount of money was needed for us to settle our hospital bill (no insurance nor good health care here) and to acquire all the necessary equipment. We had nothing left, because the first 2 weeks of Hannah's stay in the hospital had already depleted all our money. My husband and I were even forced to resign from work. All we had then was our love for Hannah and our faith that God would see us through. Indeed, God is good! He called on so many good Samaritans to help us. He made it possible for us to acquire all of Hannah's equipment, and He made it possible for us to bring Hannah home!


Now, Hannah's 3 years old already! We're still struggling, but surviving. She is a very active little girl, though she still hasn't spoken a word. She is fed by mouth but couldn't eat table food until recently, and is still eating pureed foods. She has had many bouts of infections, but only once has she ever required to be brought back to the hospital. That happened just recently. It was very scary, and staying again in the hospital made me relive all the sadness that I have in my heart because of Hannah's condition. I am very happy to be part of Kids with Vents and thank you in advance for all the things I will learn from all of you. I hope I can share something for you to learn too. God bless all our vent families!

Michael's Story

Hello, my name is Michael.  I was born with a genetic disease called Duchenne Muscular Dystrophy.  DMD is a disease that causes the weakening of skeletal muscles, respiratory system, and cardiomyopathy (weakening of the cardiac muscle).  There is no known cure for DMD and the prognosis is death.  When I was a young boy, somewhere around six or seven years of age, I was told that I probably would not live past the age of 19.  I praise the Lord every day, thanking him that I surpassed the doctor’s projection.  Today, I’m blessed; see I just turned 33 this past spring which is a milestone for a person having DMD.

Through the years, DMD has taken its toll on my body.  From the age of seven, when I could still walk, my muscles gradually began to weaken. As a result, I fell a lot because my legs were weak.  It seemed that when I walked on hard surfaces like concrete, pavement, and gravel I would fall.  I continued to stumble and fall till the age of 12 years old, when I became dependent on a wheelchair.  I lived with my parents until I was 21 years old. At that time I was more determined than ever to make something out of my life despite having DMD. I moved to Woodrow Wilson Rehabilitation Center and began studing Mental Health/Human Services. I graduated there in 2001 with an Associates Degree and Certificate in Peer Mediation through Blue Ridge Community College. I was also married to my wonderful wife Robin by then. In that same year I graduated Robin and I rented an Apartment in Stuarts Draft, Virginia. During that time, I lost the ability to feed myself, and I lost a great deal of weight. I also began having breathing difficulties along with severe Central Sleep Apnea. I began using a BiPap Machine at night and eventually a Pneumobelt in 2003. In 2005 I was placed on a Trach and Ventilator after a serious infection. The doctors told Robin that she had to make a choice.  She could either have me trached or they could administer comfort measures and let me die.  They asked me if I wanted to be trached, and I said yes.  I was facing death, but I heard God tell me “It’s not your time, your work is not done; I am not done with you.”  So, I was trached and vented a few hours later.  I started improving immediately, and by the end of that week, I was well enough to go home.

Once I got home, I was scared but glad to be home.  At first, I was not able to get out of bed or eat.  This lasted about three weeks, sleeping and drinking Ensure four times a day.  Finally, I got well enough to get out of bed however still drinking ensure.  A few days later, I said to heck with this stinking Ensure.  I got my attendant to go to McDonalds and get me a cheeseburger and French fries.  Man that was the best burger I ever ate!  Eventually, things got better and I was gaining weight and breathing great, Hallelujah!

Then, about two years ago, I developed Congestive Heart Failure from my ever weakening heart.  I’ve been a Christian for several years, and my relationship with Jesus has enabled me to get through many trials.  I have salvation through him.  This was reality slapping me in the face; it was time to get serious about being a Christian and stop playing Christian.  The news broke my heart; my heart is literally broken which is how the Lord wants it!  I was given a 70 percent chance of dying from sudden death from a heart attack.  This is the second year of that prognosis and my Ejection Fraction is dangerously low at 17 percent, but who cares about numbers.  By the way this ventilator and oxygen are just accessories, and not my life support.  Let me say this, Jesus Christ is my life support!  Amen!

I began to see the annointing God had on my life. I began taking Online Classes in persuit of a BA in Pastoral Ministries. The same year I came up with a Concept Christian Ministry for the Disabled. Today, we are called Spirit Roller Ministries and we are 501c3 Non Profit; we are also an Affiliate with Joni and Friends Ministries. We have been running a very successful program called MedEvange. We take used/donated Medical Equipment then we give it away free of charge to the needy. We also have a Mentoring Service, Couseling, Advocacy and Empowering them with the Word of God.

The latest bout with my health came this past March, when I started having heart rates in the lower 30's. This condition is called bradycardia which means my heart is too weak to keep a regular rhythm.  It was time for device intervention, and the doctors suggested a pacemaker. They said that the Pacemaker would prevent my heart rhythm going below 60 beats per minute; several doctors were skeptical while my Cardiologist remained optimistic, so I had this major decision to make. I chose the Pacemaker to have more time on this earth to serve Jesus and to be there for my wife and mother.  I was scheduled for April 30. They rolled me down to the Heart Cath Lab, slapped the monitors on me and transferred my onto the operating table.  I heard the doctor come in as the meds were administered; I only remember 2 things as I went out, someone turning this crazy music on and the doctor say, “someone bring me my knives.”  I was in surgery for 4 hours before waking up and saying, “Are ya’ll done yet?”  “Closing you up now Mr. Keen,” someone replied.”  The following evening I was so peaceful.  I stayed at the hospital with my mother and we watched the heart monitor and cried for joy; the surgery was a success and my rhythms were slow and steady.  “Mom,” I said “now I have more time to spend with you and Robin.”  “I know,” she said as she rubbed back tears in her eyes.  I woke later that night to my mother whispering, “Thank you Lord for lending me my son a little while longer.”

Ryan's Story

We adopted Ryan when he was six years old, before he had a trach or vent.  He did have many different abilities like my son, Kyle, whom we had already adopted.  I love giving a family to a child that no one wants, and watching them get enjoyment out of the little things we take for granted.


I remember telling my husband that I didn't think I could adopt a child with a trach or vent, because I knew nothing about them.  God had other plans!  We took Ryan to the children's hospital for surgery, and he went into respiratory arrest, was intubated, and admitted to the PICU.  He was then trached for laryngomalacia.  We miss Ryan's cute little laugh and his cry, but he is healthier with the trach.


Things went okay for the next couple of years, but Ryan's need for O2 kept increasing.  Another sleep study was done, and he stopped breathing 504 times - no wonder he couldn't sleep!  Since then, Ryan has used a ventilator whenever he is asleep (night time and naps.) Sometimes the vent is a pain and annoying, but it is also his best friend. Ryan's need for O2 went way down, and he sleeps much better on the vent.  He also had a laryngotracheal separation to stop his chronic aspiration, and has been much healthier since then.


Ryan was born with Bilateral Open Lipped Schizencephaly.  He also has CP, dystonia, developmental delays, and Lennox-Gastaut Syndrome (a severe seizure disorder.)  He is also non-verbal, blind, has a G and J-tube, and is 100% J-tube fed.  But, please remember to look past Ryan's disabilities, and see his huge smile and what a happy boy he is everyday!