We all have our beliefs that guide us through our lives in different ways. In our house, we have a very specific belief. It’s called pulmonary toileting. I googled it, and this is what the definition is: toileting is a set of methods to clear mucus and secretions from the airways. The word pulmonary refers to the lungs. The word toilet is related to the French toilette, and refers to body care and hygiene. Nothing religious about secretions and mucus, but this actually works!
I remember feeling so helpless over the years as Jacob had countless pneumonias, often moving from one lung to the other lung, and then back again. Antibiotics not always being able to kill the bacteria. We sometimes had to use a combination of antibiotics or course after course.
We keep Jacob away from germs as much as we possibly can, but unfortunately Jacob’s own saliva and secretions are his biggest enemies, since they often are the cause of his pneumonia. He swallows the secretions into his lungs. This is what is called aspiration pneumonia. Words that still give me the chills every time we get the diagnosis.
After 3 rounds of pneumonias only in January of last year, we decided to get really serious about pulmonary toileting. We finally got the smart vest, which is basically a vibrating vest that shakes up Jacob’s secretions from his lungs. We do that treatment 15 minutes 4 times a day, which is an hour in total. Jacob likes it! The vibrations feel good, and Jacob can lie down in a comfortable position as he is getting his treatment. At the same time as Jacob gets his vest treatment, he is also getting a nebulizer treatment – 4 times a day, 15 minutes each time. We alternate between two medications throughout the day. If Jacob is sick, we pump this up even further.
After the vest and nebulizer treatment is done, we use a cough assist. It is a machine that basically simulates a cough. We put a mask over Jacob’s face and the machine inhales and exhales for him – deep, deep into his lungs. It is NOT comfortable. I have tried it myself, and I can cough! Jacob gets this 4 times a day – 3-4 cycles of 4-5 breathes each time.
And after the cough assist, it is time for the deep suctioning. We squeeze in saline solution into both nostrils, and then use a thin catheter to go down the nostrils until Jacob gags and coughs. We do that at least one time in each nostril, sometimes more, if there is a lot of secretions that have to come out. When we started this over a year ago, Jacob would cry through deep suctioning. Now he has taught himself how to relax through it, so we can get the catheter in the nostril as quickly as possible, and get the gunk out! It doesn’t even face our little boy (or us) any longer. We do this a minimum of 4 times a day as well, but often more like 8 times a day. If he is sick, I can’t even start telling you how many times a day we’re talking about. It is just part of the day whatever we do.
It is an art to deep suction. I don’t know what other way to say it. It doesn’t matter how long you have been a nurse or a respiratory therapist, some just have that right touch, some simply don’t. Some go too fast, and pushes the catheter in, which leads to a pretty uncomfortable bloody nose. We have a very small but excellent deep suctioning crew around Jacob 24 hours a day, since we do it around the clock – day and night.
We end the pulmonary toileting with mouth suctioning where we basically use a thicker catheter to just suction out Jacob’s mouth. This is like when you go to the dentist. Then comes the clean up of the room, and putting stuff away.
I would say that we probably spend about 2-2,5 hours a day on pulmonary toileting – winter or summer. When he is sick with a respiratory infection, it is a constant part of the day.
But it is working! It is one thing that I so strongly believe is helping Jacob to stay healthy. It takes time. The morning and evening hours of Jacob’s day are really, really busy. We have a hard time being social in any shape or form between 8-9 am and 7-8 pm at night, but have figured out a way to get it all done, and to make sure Sarah has a part of it. Yesterday, I was making pancakes for Sarah as Jacob was getting his vest and nebulizer treatment in the morning to jump back on the cough assist while Sarah was eating her pancakes. Nothing like a little bit of multi-tasking in the morning!
But it does work, and it has helped our little guy so much to keep his lungs clear. It has sort of turned into a religion in our house, pulmonary toileting.