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.
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.
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.
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.