Last spring we changed Max over to a VOCSN, the new multi-function ventilator from Ventec Life Systems which also includes Oxygen concentrator, Cough assist, Suction, and Nebulizer. (That's right, VOCSN is an acronym.)

After eight years of carrying a Trilogy vent, T70 CoughAssist, and Easy Go Vac suction (all x2, since we never leave home without backups), we were ready to consolidate.

It's been pretty great so far...only one minor problem, easily resolvable. (The touchscreen stopped working; a hard reset resolved it, details below.)

A few observations from the transition which may be of interest to other patients considering the VOCSN:

• We were set up with two VOCSNs, one as a "home vent" and the other as a "travel vent." However, when we travel, we will always carry both with us (just like before when we always carried the backups with us -- always be prepared).
• We got a humidifier upgrade as well -- from F&P MR-410 to F&P HC-550). The HC-550 (which is recommended by Ventec for use with the VOCSN) runs a heated tube using two temperature probes. We moved from refilling manually with distilled water to bag water, which is kinda nice.
• The VOCSN has its own custom vent tubes which include a secondary tube to route O2 from the oxygen concentrator plus a special one-way valve to close off the humidifer during cough mode (to avoid blowing water into the tube). The latter is not included in the "travel vent" version of the tubings (which is designed for use with an HME instead of a ventilator).
• The suction is considerably quieter. Like, wow quiet. Like, a long time ago I made a wish list of medical technologies to invent and put "silent suction" on there (because the average portable vacuum suction unit is incredibly loud which can be awkward in certain social settings) and this feels pretty darn close, quiet.
• I have not noticed any build-up of sputum from using the same tubing for coughs and vent. We have an omniflex on the end and can change it out easily enough if we notice it gets dirty. Occasionally if some mucus goes into the omniflex, we just suction it out with a catheter; no problem.
• Max has shown no issues with breathing on it and reports that he likes the VOCSN: he likes the coughs, the suction is fine, and he has no trouble using the passy muir valve with it.
• It supports multiple presets for cough mode; currently we have a 5-cycle option and a 10-cycle option. You can set it so that the suction comes on automatically when you start the cough.
• Battery life is approximately nine hours: 3 hours internal plus two 3-hour batteries. Buying additional batteries is quite expensive ($690/pair), but between the two vents we have 4 batteries, so up until now we have been using/charging strategically.
• The suction has been strong enough to do the job. We don't have it on full power.
• It runs through an automated pre-check each time you change the tubing (to test that everything is hooked up right and working fine). This is another reason that a vent-dependent patient needs to have a backup or travel vent on hand.
• It runs slightly louder than the Trilogy, mostly just from the steady pitched hum of the internal fan. Occasionally the one-way valve by the humidifer will make a low-pitched squeak or woof sound...I noticed this a couple times at the beginning but haven't heard it in a few days.
• The travel vent mounted beautifully onto the back of Max's Permobile F3. Saved us a lot of work vs figuring out how to mount a Trilogy 100, CoughAssist T70, suction, and humidifier on there, the way we had on his previous power wheelchair.
• The home vent hooks up to a typical suction canister. The travel vent is configured with a custom VOCSN receptacle for suction contents, which is connected to the side of the VOCSN. Like the filters and vent tubes, these are replaced regularly.
• The story of what it took for us to get this done is its own long saga (involving an in-person trial in early 2020, a global pandemic, a national vent shortage, a non-optional change of insurance companies, and a self-elected change of equipment companies). In the end, Anthem BCBS and PromptCare got us there. (Kudos to both.)
• In summer 2022, we took his two VOCSNs for a week at the beach. This unit is a champ. No problems.
• As of fall 2022, we now have the HC150 running inline with the humidifier circuit for the portable/travel vent setup on his power wheelchair.
• In spring 2023, we noticed that the VOCSN (a) wouldn't issue a cough when it's only running on the internal battery, and, more annoyingly, (b) instead just shut down mid-function when we tried to do this. Obviously this is un-ideal (and even dangerous) -- if it doesn't have the power to do this, then it should prevent the user from enabling cough mode (and even warn ahead), rather than just shutting off. When this happens, you can turn it back on, and it will resume ventilation. Our workarounds for this is mainly to make sure we keep batteries charged; when we are out and about, instead of leaving the backup vent in the car, now we remove the extra batteries from it and take them with us, to double our time. And, as usual, we try to plug in and charge whenever possible. So...while this was a major surprise the first time it happened (and resulted in a quick AMBU bag session while we swapped vents and debugged what happened), now it's just one more small thing to workaround. But our verdict is that it's still worth it for the convenience of not having to lug as many machines.
  

The National Scoliosis Center published a blog post on the benefits of customized braces for childhood SMA which features a picture of Max sporting his new Rigo Cheneau brace. Check it out!

The Jewish Federation of Greater Washington highlighted Max's attendance at the Bender JCC Preschool via BEAM telepresence robot as a wonderful example of the JCC's commitment to inclusion. This video they commissioned looks inside the classroom that Max attends, beautifully capturing the relationships between Max, his friends, his teachers, and the entire preschool community.

When Max told us last summer that he wanted an "orchestra" birthday party, we never dreamed that his wish would find its way to Pablo Urbina and the London City Orchestra...or that they would utilize the marvels of modern technology to give Max a personalized, virtual tour of the orchestra as a one-of-a-kind birthday gift!

We were so blown away that we just had to share it with others. Enjoy!

This year Max began receiving Spinraza, the first approved treatment for SMA. The drug is a huge milestone for the SMA community, but it's also the beginning of a new leg in the race for more effective treatments and ultimately a cure. Max needs your support to get there.
​

Carolyn Y. Johnson writes on the ethics of Spinraza for The Washington Post in this article featuring Max:

​Looking for a pick-me-up? Listen to Kristen tell Drew from The Midlife Commute Podcast all about life with Max and SMA!

Kristen was one of a handful of SMA community representatives invited to testify about the burdens of life with SMA before FDA representatives at this week's SMA Patient-Focused Drug Development Meeting.

Meetings like this help show how FDA decision-makers are actively listening to the patient populations affected by their decisions.

Watch her brief testimony by clicking on the video below...or read her testimony in full on the Cure SMA website.

NBC4 Washington reporter Chris Gordon (and videographer Lance Ing) helped us share our experience having Max attend the Bender JCC preschool via telepresence robot.

One of our favorite parts of the story:

You can read the full story at NBC's website: Robot Allows Maryland Boy With Degenerative Disease to Attend School, Connect With Classmates.

Check it out! Max and a friend are on the cover of the March 2017 edition of Center Scene (the magazine of the Bender JCC of Greater Washington). The cover story describes how Max is attending the Bender JCC preschool via Beam telepresence robot.

​Our gratitude to the JCC and everyone involved for helping us share this cool story more widely with the people in our neighborhood.
​

A BEAM of Light at the Bender Early Childhood Center
by Andrea Kronzek

​“It’s fun to have Max in our class. I like that Max doesn’t bump into too many kids with his robot. The robot helps him learn with his friends at school.” —Sahil, Max’s classmate

Meet Max, a 3-year-old student at the Bender Early Childhood Center. Max has spinal muscular atrophy (SMA), a motor neuron disease which leads to degeneration of the muscles that help the body to move. Because Max’s mind and sensory nervous system are unaffected, he thinks like a typical child his age.

Kristen and Yahnatan Lasko, Max’s parents, knew that in order to help their bright, differently-abled little boy reach his full potential, they needed to find a welcoming preschool community with teachers and staff who were willing to step into unfamiliar territory. They approached the Bender JCC preschool to discuss enrolling Max.

“The administration was willing to join us on the journey and quickly set about making this a reality,” says Yahnatan.

Because respiratory infections pose a significant risk to children with neuromuscular weakness, Kristen and Yahnatan proposed a telepresence robot as the best idea for how to get Max safely into the classroom. Thanks to cutting-edge technology, Max now attends preschool at the Bender JCC via BEAM, a telepresence robot. Max’s BEAM is his daily “avatar” in the classroom; through it, he learns and interacts with the class.

“Max’s teachers, Allyson and Victoriya, prepared the class to explore what it meant to welcome someone new,” Kristen explains. “Max quickly became a beloved member of the class.”

Every day for up to two hours, Max “BEAMs” into class. He loves art, music, chasing friends (and being chased), and talking with his friends.

“We talk with Max about what he is learning in school and marvel at how the interests of the class influence what he chooses to explore at home,” Kristen remarks.

“Having Max join our class through his BEAM robot has been an incredible experience,” says Allyson Levine, Max’s teacher. “The relationship that has formed, and continues to deepen every day between Max and the other children, is inspiring. The children went from being extremely excited about having a robot in our class to simply being excited to have Max in our class. It’s as if they don’t even see the robot anymore. They are all constantly finding new ways to connect with him.”

To his classmates, Max is a good friend who has much to contribute. Eli loves being Max’s classmate. “Max helps us learn about him and his robot. I never want to take my eyes off his robot because it’s so interesting.”
Eli’s mom Elizabeth says that it’s great that we have this technology to allow kids to interact and be exposed to children with differences. “I think it’s a fantastic opportunity to meet a child they might not have otherwise met.”

Kristen and Yahnatan say they are extremely grateful that the Bender JCC Preschool has welcomed Max, helping him to learn and grow. “The Bender JCC Preschool surpassed our best hopes.”

By the same token, the Bender JCC is grateful to the Lasko family for choosing our preschool and meaningfully enriching the lives of our students, teachers and all who come in contact with Max.