People who have visited our home are usually surprised to see all the things we have to do to keep Julianna healthy and – let’s face it — alive. It is a labor of love, and I am grateful for every day that we are allowed to take care of J.
This is the first in a series of posts that details Julianna’s medical equipment and care.
Every time you cough or clear your throat, you are performing “pulmonary toilet”. This clears stuff (secretions, mucous, germs – J calls it “junk”) from your airway, and it is a vital function.
Julianna has lost virtually all ability to do this for herself. We do these treatments twice a day to help keep her lungs clear.
If you’ve ever had an asthma attack, you are probably familiar with neb treatments. These are machines that deliver medication to lungs via small droplets. Traditional nebs take about twenty minutes and are loud.
We have an Aeroneb, a hospital grade nebulizer that delivers medication through her BiPAP tubing. It’s fast (6 minutes per neb) and silent.
The Aeroneb is my favorite piece of medical equipment. It’s like a Maserati. The regular nebulizer is like Tico, the $150 car I drove in Korea.
Julianna gets albuterol mixed with hypertonic (7%) saline. The albuterol opens the airways, and the 7% saline thins the secretions. (Normal salt content in body fluids is 0.9%.) 7% saline inhaled into the lungs can be incredibly irritating. J handles this like a champ.
After the neb is done, she gets the “booger sucker.” A separate attachment lets us do oral suction. We never know when this will be needed, so the suction machine goes with her everywhere.
Next is the “bumpy vest.” This machine is basically a compressor. Julianna wears a vest (pink, of course) that connects to the machine by two hoses. The vest has an internal “bladder” which inflates and deflates very quickly (8 to 12 times per second). This percusses the chest wall and also helps thin secretions.
The vest can be difficult for Julianna. We think that it’s gotten more uncomfortable because of worsening scoliosis. She does 10 minutes twice daily now, and we usually have to take a lot of breaks.
To get her through, we sometimes pretend that she is a baby lamb.
Me: That’s a good baby lambie…
J: Thank you
If you have ever strained a rib muscle with violent coughing, you know that we are able to generate an enormous amount of pressure with a cough. Without the ability to cough, junk stays in our lungs. This machine simulates a cough – it pushes in air and sucks it back out.
Julianna is BiPAP dependent, but she doesn’t require extra oxygen when she isn’t sick. When she does get sick, she needs BiPAP plus extra oxygen “bled into” the line. Tucked away in her princess closet, we have a massive oxygen tank and concentrator.