Saturday, August 27, 2016


As a Respiratory Therapist and mother of someone who is ventilator dependent, I'm always interested in new and different modes of mechanical ventilation.

Here are some of the ones we have used or tried out for my son, Josh.

1. the LTV 950 Ventilator. (there are newer versions of this ventilator in use now)


The LTV was a good ventilator and allowed Josh to come home and still breathe. But there were some things we did not care for with this ventilator -

the two-limb circuit was a bit heavy on the trach which can pull out and be dangerous.  And it had a valve you had to turn to set the external PEEP- it could break easily and was difficult to set just right

The air that goes into the lungs is powered by a turbine which is quite loud

there are so many buttons that could easily be inadvertently pressed changing method or mode of ventilation,

and the vent is heavy to carry - especially for a young boy.  We had to mount it to a stand, or cart. 

2. the Trilogy 100 Ventilator.

In my house, we like this ventilator much better.
It is lighter (11 pounds) and easily sits on a table top but can still be used on a vent stand.

  There are far fewer buttons and much less chance of accidentally changing a setting.

The ventilator operates with a very quiet blower, and just very user friendly.
We can use a single "passive" circuit - but don't forget the exhalation valve.
The PEEP is set internally, too.
It comes with a SD card that holds data from the computer important for the doctor.
It has an internal battery that can last 3 hours and a clip on battery that can run the ventilator an additional 3 hours.
You can use a car charger and run it in the car or hook to a big heavy "marine" battery to run it another 12 hours (in case electricity going out for long periods of time).

Of course that is still POSITIVE pressure ventilation - pushing air into the lungs - which is opposite of the way we usually breathe. Here is a video about the difference between positive and negative pressure ventilation:

3.  We have also tried out the Hayek RTX Ventilator.

 This is a big clear plastic shell that fits on the outside of the chest and forces open the chest, so you naturally suck in air and pushes air from the outside on the outside of the chest so you breathe back out -  that is non-invasive external ventilation.  Some people swear by this kind of ventilation. We thought maybe it would be something Josh could use and then not need a tracheostomy tube anymore.
Unfortunately for us, it did not work well for Josh.  First, the machine is LOUD -  like running an old timey vacuum cleaner.  It did not cause Josh to blow off enough CO2 - which is what ventilation is really all about.  And the shell was terribly cumbersome and uncomfortable - in fact painful - for Josh.

4.  Luckily for us, we learned about another tool for ventilation - phrenic nerve stimulators by Avery Biomedical.

They are like pacemakers to shock the nerve that makes your diaphragm muscle contract.  That forces you to take a big breath.  The electrodes are surgically implanted, sewn onto the nerve.  They are connected by wires inside the chest to a receiver that is placed just under the skin.  Then, you tape on antennas on the outside of the body over those receivers. 
The antennas send the signal from a transmitter box in to the receivers delivering the shock to the nerve.  And you dial in the number of times per minute to deliver the shock and cause a breath.  This method works very well for Josh most of the time.  You have to change the 9 volt batteries in the transmitter box frequently, make sure the antennas are in good shape (a new pair can cost over $500) luckily insurance so far is paying for a set per 6 months for him.  Josh's doctor has him using the pacers during the day as long as he's not sick.

When Josh came down with swine flu and double pneumonia back in 2010, the shocks and forced breaths caused Josh so much pain, he could not tolerate them and had to use the Trilogy ventilator 24 hours per day.  We find that as Josh is overly fatigued, the pacers do not work as well to blow off co2 as they do when he is awake, alert and moving throughout the day.  So, when he sleeps, he hooks up via trach to the Trilogy ventilator.

So, as long as the positive pressure ventilator is going to remain a useful tool for us to keep Josh alive and well, I love to check into the latest and greatest in technological advances in this area.

Some of the newer home ventilators I have been reading up on include:

The Revel by CareFusion

The Astral by Resmed

The Vivo by Breas

Wednesday, August 17, 2016

Promotion, Josh Graduates, New Baby on the Way, IPV Letter and Much More

You may have noticed I've been absent on my blog page for the last what ... almost 2 years???  Sorry.  I have been incredibly busy and neglected my duty :) to keep you informed here.  I will catch you up in a minute... but first...

My son's doctor's office asked me to write a letter about the importance of IPV.   They are hoping letters like mine will help ensure Medicaid and other insurances continue to pay for this very important breathing treatment.

 Here is what I wrote:

Dear Sirs,

Allow me to share with you the story of my son, his rare disorder and how a machine known as the Intrapulmonary Percussive Ventilator, or IPV, saved his life.

My son, Josh, was born healthy, grew and developed as expected until he was 8-and-a-half years-old, when in March 2005, he suddenly went into respiratory arrest.  

 It took months to learn, but he was the 23rd person in the world diagnosed with Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD syndrome).  It means his brain, for some unknown reason, stopped knowing to breathe, produce hormones and basically do anything our bodies usually do without us even thinking about it.  There is no cure.  We must monitor his symptoms and treat them as they arise.

So, at 9 years of age, my son received a tracheostomy and came home dependent on a mechanical ventilator.  But he would be back in the hospital several times to treat electrolyte imbalances and respiratory infections.

One hospitalization was in January 2010, when my son contracted the dreaded swine flu and developed double pneumonia.  His pulmonologist tried many types of treatments to clear his lungs of the infection, but none seemed to work… until the IPV.  After several IPV treatments each day in the hospital, my son’s lungs cleared up.  It worked so well, the doctor ordered an IPV for home use.

Luckily, we had Medicaid through a waiver program, and it paid for this expensive machine.  We were ordered to give my son treatments each morning and night.  We followed those orders and my son has not spent a single day hospitalized since he was discharged in 2010!

Since that time, I have also gone back to school and become a registered respiratory therapist. This has given me opportunity to meet the maker of the IPV, Dr. Forest Bird, as well as witness several presentations on the machine.  And, I have administered IPV as a therapist in a clinical setting – in the Pediatric Intensive Care Unit at University Hospital in San Antonio.  And as a therapist working for a DME company now, I have also instructed nurses in the homecare setting on the proper use of IPV.  

I have seen explanation of benefits letters stating that there is not sufficient evidence to prove IPV is as effective or more than other methods of secretion clearance.  But due to my first-hand experience with the IPV both with my son and other patients, I must say that I disagree with that statement.  I have had a patient who was getting IPV treatments at home, doing well.  Then, the patient aged out of their insurance plan and move to another that does not pay for IPV.  They were changed to a vest and nebulizer treatments, because those were supposed to be equally as effective.  However, within a month’s time, the patient ended up sick with pneumonia and required a hospitalization.

You see, the vest can shake secretions loose in the airways, but it does not necessarily move those secretions up far enough in the largest airways where they can be suctioned out.  IPV, when used correctly, allows pressure to move past secretions into the alveoli, even those that are collapsed or blocked with secretions and get behind the secretions to push them up and out into the larger airways – and even up and out into the patient’s trach, mouth or nose where they can be suctioned.  This makes it the ideal treatment to not only clear secretions but to re-inflate collapsed alveoli.

I for one would like to see more studies done to prove that IPV is as effective as I have personally witnessed it to be.  And I would like to see more insurance companies pay for this device for patients like my son who have proven that it has kept them healthy and in a home setting rather than hospitalized.  I truly believe IPV saved the life of my son – and likely many others as well.

Thank you for your time and attention.  I hope that you are able to help provide this life saving respiratory treatment for patients in the future.  If I can be of any further assistance, please don’t hesitate to contact me.  You can reach me at my home or my office. 

Warm regards,
Vanessa J. Wooten, RRT                                                                                                                            

        Who else has experience with IPV? 
         Anybody else interested in writing a letter? 
        How about know someone to share it with to help make changes with insurance companies???          
        Feel free to share it.

Now, back to updating you all on what's been going on with us.....

I just celebrated my second anniversary with durable medical equipment company - Apple Homecare Medical Supply in San Antonio. 

A lot has changed in that two years.  I went from working out of my home and a storage unit to opening an office and working with more and more local co-workers - then not so many in my office, but more that are usually long-distance co-workers.  The best part is I get to serve many patients and their families who have become quite near and dear to my heart.  And the most recent news is that I got an official promotion.  I am now the Office Manager and Lead Respiratory Therapist in the San Antonio office. And, we have a couple of therapists new to the company coming to work with me in my office.  They are so talented and kind people and I can't wait for everyone to get to meet them.

Josh is doing great.  He graduated high school June!


  He has a part time job working at Schlotskys as a food prep specialist.

Josh will begin this school year attending the 18 Plus program.  There, they introduce young people with special needs like him to a variety of different job types. They will travel to job sites and see what all is involved.  They also work on activities such as paying bills, cooking, cleaning and chores necessary if one were to live on his or her own.  We do not foresee Josh being able to live on his own - primarily because he does not recognize when his breathing is in trouble or he starts to dehydrate.  

He still has nurses watching over him day and night.  We have had some nursing changes - one of his long time nurses left us a few months back.  That was sad.  But, luckily we still have some good nurses with us.  We also changed nursing companies recently.  We want to make sure our dedicated nurses are paid as well as possible and have good benefits.  Happy nurses help you fill shifts and have a healthier patient :)

And we are worrying a little about another big change coming our way.... the Medicaid Waiver program paying for most of the medical equipment, supplies, nursing, doctors, etc. is being changed over to a Managed Care Organization called Star Kids.  The big change is coming November 1st.  There are lots of families of special needs kids worrying they will lose access to their children's doctors, therapists, medications or equipment (like the IPV I mentioned above).  Working for a DME company, I can tell you providers are also concerned about the change.  Our company has investigated all the MCO's that will be offered in the areas where we have offices and signed on with them all so that we can offer our services to our patients.  But how everything will be paid by those MCO's is still yet to be seen.  I guess only time will tell.

In other news, James and I will soon be grandparents once again.  


Steffany and husband are expecting their second son in October. 
They have chosen the name Blake Bryan Boyd. 
We can't wait to meet and spoil him just like we do with big brother Logan.  

James had a brief hiatus from working nights.  He was hoping working days would be a permanent change but his company has decided they just can't make it without him working overnight.  Hopefully, they will find a way, and soon.  James is so tired of working that shift.  He feels like he is always missing out on joining the stuff we do when we are awake and off work.

He did win an award with his company!  The Purple Promise Award. 

FedEx Freight flew us to Memphis for the awards ceremony- 

and we got to tour Graceland, the home of Elvis!    

I know I am missing a lot... for much more news and many great pictures of what we've been up to... monitor us on Facebook.

Tuesday, January 7, 2014

Close to Home

Recently, as I was checking in on our fellow families with kids suffering with ROHHAD (on one of our Facebook group pages) I saw my name tagged in a post.  It was a news post about a little girl being denied a gastric bypass surgery due to her age.

The reason her doctors felt she needed the surgery, though is because she had a tumor that damaged her hypothalamus (the part of the brain that controls hunger among other things).  The reason my name was tagged, though, was because the girl is from Cibolo - that's where we live.  I have not actually met anyone living in Cibolo who has a child with a damaged hypothalamus.  We thought Josh was the only one living here whose hypothalamus was not functioning correctly.

Here is a link to that original story I saw:  Obese, but starving: Girl, 12, denied weight-loss surgery

Since seeing the news story, though, I have been curious about this family and wondered about the similarities between that girl and my son.  I've since learned that the girl, her name is Alexis Shapiro, had the trouble with her tumor that brought on her obesity, when she was 9 years old.

Alexis Shapiro before/after hypothalamus damage

 Josh was about to turn 9 when he was diagnosed with ROHHAD.  His major symptoms all came on when he was 8 and a half.

Josh (age 8) in Feb 2005, days before going into respiratory failure
 and Josh as he has grown

Josh is now 17 and in 10th grade

Josh has been screened for tumors of neural crest origin many times over the years since his diagnosis - but has never had one discovered.  There are some in the ROHHAD community who have suggested perhaps some of our kids had tumors that damaged the brain in that area but then the tumor may have disappeared on its own????  Since none of us knows for sure what causes ROHHAD, we cannot be sure one way or another.  I just find it fascinating that another child so close to our home is dealing with something so similar to my son's disorder, which is extremely rare, and we have never crossed paths.

I did learn today, that Alexis has been approved (by her father's military insurance) for the gastric bypass surgery her doctors feel she needs.  Here is a link to that update on her story: Hope for Alexis: Insurance will pay for surgery

I shared her story with Josh this morning. I also emailed a reporter covering her story to offer my contact information to the family in case they would like to meet.  I think it helps to know someone else out there (especially so close by) is going through some of the same things you are dealing with.

Discovery Documentary - Life or Death : Battling to Breathe