I thought many of you might be interested in learning more about the various pieces of equipment in our home that help keep Tori healthy, nourished, and comfortable. Each of these help maintain her quality of life.
It forces air into and out of the lungs which loosens anything that might be in there. I’ve been told it feels very unnatural.
After using the cough assist we suction Tori well and then give her two puffs of albuterol. This is done at least once a day, and if she ever gets sick it will be done every four hours around the clock.
This is the single most important piece of equipment in our home because it is how Tori has been fed for nearly a year now, through her g-tube.
We are able to adjust the speed of the feed as needed (last summer, for example, we slowed it down to feed her over an hour instead of thirty minutes), and it makes feeding her very simple.
All of the feeding bags (three per day) and other supplies are delivered to our house every two weeks.
This machine monitors the oxygen levels in her blood as well as her pulse.
You can read about the benefits here.
The goal is to get Tori in her stander for at least one hour per day, with the ideal being two one-hour sessions per day.
We have two suction machines for Tori – portable (top photo) and stationary (bottom photo).
These two are vitally important as Tori began to lose her swallowing ability in June 2015. This allows us to remove secretions from her mouth to prevent aspirations.
The concentrator pulls air into the machine and somehow keeps only the oxygen, which then flows through the tubing and into Tori’s nose.
The top part of the machine is a “home fill” machine which allows us to fill her oxygen tanks on our own.
We keep the large concentrator in our bedroom and have 25 feet of tubing to move Tori around the house without having to move the machine.
We haven’t been able to use this yet, but it is another tool to help Tori’s lungs remain clear and healthy.
Tori’s vest was ordered months ago by her pulmonologist, but we have yet to receive it. Thanks to Tori’s buddy, Parker, and his parents (and thanks to Hunter’s Hope for helping get it to us), we now have one to use until hers comes in.
The vest vibrates and gently “shakes” the baby in order to break up anything that might be in the lungs.
The other Krabbe parents report that their babies love the vest treatments, so we can’t wait to see what Tori thinks.
You can read about her stroller here.
We are thankful for each of these pieces of equipment, even though they take up a lot of room in our house. 😉 We are even more thankful that our insurance paid for all of these without questioning anything and that we received her equipment fairly quickly. That is rare and we don’t take anything for granted.
Now you have a little insight into the technology and equipment that we use to help Tori feel as great as we can ❤️