Out with the old

Last week I went in for my regularly scheduled replacement of my gastrostomy tube (a.k.a., g-tube), but this time we exchanged it with a different type of g-tube called a MiniOne balloon button, which has a smaller exterior profile and is more flexible internally which will provide greater comfort.

To make the change, we had to purchase the device out of pocket but the hospital was willing and able to insert it and we decided that it was worth the expense if it provides more comfort to me.

As a side-note: I’m no longer able to hold my neck up when we hit potholes or bumps in the road anytime we need to be driven anywhere (we schedule shuttles that can accommodate my wheelchair)—it’s like repeated whip lash throughout the drive. We were able to get a head strap attached to the headrest on my power wheelchair and it works great to provide me the head support I need as a passenger in a vehicle.

The procedure itself went smoothly, although it took the rest of the day at home to recover. I had it done in the main hospital because of my past history and strong vasovagal response which can cause me to pass out when I get anxious about medical procedures, and also so they could xray the site after the switch out to be sure everything was placed correctly since we were using a new device.

We are still not using the g-tube for regular feedings, but that is soon to change as I’m beginning to have some difficulties swallowing certain types of food. The feeding tube will be used to provide a liquid diet high in calories and nutritional value, which will be helpful for me to maintain my weight. We’re not there yet, but I assume we will start feeding using the g-tube sometime early in the new year and I’ll continue to eat small amounts of food by mouth for pleasure for as long as it is safe to do so.

I also recently had an EKG to be sure that the episodes where I’ve passed out were in fact due to my strong vasovagal response and not something more worrisome. Since I’m no longer able to stand or help with transfers, I was able to stay seated in my power wheelchair for the procedure. We’ll follow-up with my cardiologist next week to review the results.

The other test I’ve completed since my last update is a pulmonary function test. I have been having a little bit more difficulty breathing during certain situations. This test helps my pulmonologist better track and understand changes in my breathing capacity over time. The results confirmed a decrease, but not a drastic change.

To that end, we were just approved for a new breathing ventilator—the VOCSN—which will go back-and-forth from my office to my home, and is all-inclusive of a ventilation, oxygen, cough assist, suction, and nebulizer functions. It took a great amount of effort from Jennifer, and my PCP Dr. Sarah Rasca, to get this device approved by my health insurance.

The cough assist and suction were first ordered in April of this year and the long delay in getting the doctor’s order filled for those new devices led us to pursue changing from an Astral ventilator plus separate cough assist and suction machines, to a multi-function ventilator that combines all of these features. The device was suggested by my Synapticure neurologist, Dr. Danielle Geraldi-Samara, who is based in New York and has helped establish two ALS clinics, whereas most of my care team in Hawai’i (and the durable medical device folks themselves), were either unaware of the VOCSN or did not know that it could be used for non-invasive ventilation.

The VOCSN was delivered on Monday and is already part of my daily functions at home and at the office.

It turns out that I’m the first person in Hawai’i to use this device in their home who is not trached. So I continue to be a pioneer and trailblazer in my ALS journey!

And finally, just for fun, we wrapped up our end of the year membership campaign at Hawai’i Public Radio this week. My work colleague, Russell, is a Washington football fan, and we have a ongoing bet that when the Dallas Cowboys play the Washington Commanders the loser has to wear the other team’s jersey for a full day! Monday was spirit day during our membership campaign, so he had to wear my Cowboys jersey all day. See below for how happy this made him!

Much love and aloha to all of you for continuing to support my journey.