Breathing Treatments for the Wee Babes
When we first found out that our one month old baby had Primary Ciliary Dyskinesia and that it causes progressive lung disease, everything seemed impossible. How could this happen ? (answer: genetics) Why did this happen to OUR baby??? (answer: also genetics) How are we, as his parents, going to do this?? (answer: I’ll tell you how in this blog) How is Elliot going to handle this when he gets older? Will he be responsible enough to do all the work it takes to slow the progression of inevitable lung disease?? (Ooof. Future me will get back to you on this one.)
Let me start with a couple things before I share what our breathing treatments looked like when he was a wee one. I feel like our backstory provides understanding for how we manage this disease the way that we do. Our baby was diagnosed by an extremely serious, extremely intelligent, extremely effective pulmonologist up in Alaska. We are sooooooo thankful that he was around to catch what most doctors don’t. He was currently treating one other child with PCD at the time, but also a whole slew of people with Cystic Fibrosis. We were told by his nurses and respiratory therapists that he has helped make great improvements for people with Cystic Fibrosis. He was the type of doctor that got right to the point. No bullshitting. No sugar coating. He would share what he knew, mostly from studies in Cystic Fibrosis. Studies that scared us from water. Puddles. Lakes. Rivers. Showers. Bathtubs. Kitchen faucets. Misters. Humidifiers. Hot tubs. Bath toys. Squirt guns. Hoses. Pools. So should we avoid these things??? I remember getting a few shoulder shrugs on his end. I understand now…that he felt obligated to share…but ultimately it was up to us to decide what we do with this information. This doctor and his nurses and respiratory therapists gave us our directions on how to administer daily breathing treatments and just as importantly, how to clean our devices to prevent infections and reinfections.
Please remember everything I share is second (or third??) hand. I am not a doctor. I am not an expert. I am only sharing what WE did for daily breathing treatments for our baby diagnosed with PCD. Always contact your doctor before starting any new treatments.
When Elliot was a wee babe, we did breathing treatments 3x a day. I think the doctor said we could get away with only 2x a day, but I was a scared, nervous, anxious stay-at-home-mom who wanted to do anything I could to make my baby healthy. So I added in the midday treatment wherever we happened to be. Parks. Museums. Gyms. Kids’ art studios. Side of the road on road trips. Friends’ houses. I would just leave out the nebulizer for the midday treatment if we were out and about. I also had an energetic 2.5 year old at the time, so being home midday for treatments wasn’t going to work for us.
Breathing Treatment Supplies:
.9% saline vials (prescription)
Nose Frida, the Snot Sucker (Amazon)
Levalbuterol Inhaler (prescription)
Inhaler spacer w/mask to administer Levalbuterol- We have always gotten this from our wonderful respiratory therapists at appointmnents!
Nebulizer compressor- We have gotten these from pharmacies with a prescription, but we have also gotten them online thru Just Nebulizers
Pari baby conversion kit for nebulizer- we also get through Just Nebulizers
3% or 7% (prescription) Speak with your doctor about which is the best for your needs. These are considered hypertonic salines, made to be inhaled through the nebulizer. 7% is obviously stronger, but sometimes intolerable. I think we may have done 3% for a few months to a year…but have done 7% ever since.
Kleenexes! (Costco!!!!)
For Cleaning and Sterilizing Daily!
Stainless steel bowl for soaking nebulizer parts
Dish soap
Clean, white paper towels
Wabi Baby Sterilizer and Dryer (Amazon)
Distilled Water (We buy at our grocery stores)
Chlorox wipes (for the counter and sinks to prevent infections and reinfections
Steps for Breathing Treatments
Wash YOUR hands!
Clean nose : Babies have snot. Babies with PCD definitely have snot. If their noses are not clean, their sinuses will be obstructed and will not be clear to receive the medicine properly. Also…what doesn’t get cleaned out of the sinuses will slowly make its way to the lungs! We were told to avoid saline sprays. Our pulmonary doctor prescribed us .9% saline vials. These came in a big pack (of 100 I think?) We would lay our baby on the changing table or on our laps, put a few drops from a vial into each nostril, then used the Nose Frida to suck out the snot. Ew?? You would think. But oddly, SUPER satisfying to see just how much guck you were relieving your baby of.
Open airways: (According to your doctor’s orders) We used the Levalbuterol with the spacer to give a couple puffs.
Nebulize: We would hold our baby on our laps while we nebulized with the 7% sodium chloride. Sometimes he didn’t want to sit still and would squirm and cry. We had cartoons on to give him something to distract him. We were told by our first pulmonary doctor that if the nebulizer mask does not have an “air-tight” seal that 90% of the medicine is lost. Not sure if this is true…but that info wasn’t lost on us. There were only a handful of times where he squirmed and cried so much that we tried putting him in the car seat (that we brought into the house) and strapped him in to help us keep him still in order to nebulize. Nebulizing the saline is meant to loosen the mucus in the airways and to invoke coughing. Coughing is good! That is what we want kiddos with PCD to do….cough to clear out their airways. But too much coughing with the nebulizer might mean the sodium chloride potency is too strong. As always, speak with YOUR doctor!
Run the Nebulizer: When we are done nebulizing, we pull off the nebulizer cups and mask from the tube and let the nebulizer run for about 15-20 minutes to blow any moisture that builds up into the tube OUT!
Manual Chest Physio Therapy: We were instructed by our first pulmonary doctor how to do manual chest therapy. In our case, this involved using a littler “clapper” device that you hold between your fingers. You will need to receive specific instruction on this from your own pulmonary doc or respiratory therapist. I remember being told by our doc to tap lightly but as fast as you can in each spot. And my husband and I had the right biceps to prove we followed his instructions :). It took us about 15-20 minutes to “hit” each target on the chest, back, and sides. Our baby became so used to this….that sometimes he even fell asleep while we did this.
Final nose clean: We would end his breathing treatment with one more round of nose cleaning. Between the tears that sometimes came and also the nebulizing and physio therapy, there was often more snot to clean out. Yay! Throw away the vial of .9% saline so that you use a new, fresh, sterile one for the next time. Clean out the Nose Frida! We would use rubbing alcohol to clean the nose piece and rinsed out and soaked the chamber in the stainless steel bowl with warm soapy water. Be sure to change out the filters!
Cleaning & Sterilizing Equipment
We were taught by our first pulmonary doctor JUST how important it is to always make sure that our nebulizer parts are always clean and as sterile as possible. After treatment is done. We take our nebulizer chamber apart and add these + the mask into the stainless steel bowl that is designated only for this, we then add one or two drops of dish soap into the bowl and fill it with hot soapy water. We let the parts soak for at least 20 minutes, rinse under running water, then dry on the counter on top of a clean white paper towel. Next….we add the parts to the Wabi Baby Sterilizer, following the directions of the sterilizer. Be sure to use distilled water for the sterilizer! Take advantage of the dryer option! We were told NOT to use the nebulizer if any sitting water has pooled on it, so be sure that it is fully dry before the next use!
Tips and Tricks:
For treatments that must be done while you are out and about, we took what we called our “Clap Bag.” In this we had clean kleenexes, some .9% saline vials, (can’t remember if we took the Nose Frida…kind of gross to do in public) the inhaler w/spacer, and the “clapper.” I would skip the nebulizing for this midday treatment. I would get many-a-strange looks while doing his treatment…but it was an opener for brief educational tid-bits about a disease no one has ever heard of before!
Buy yourselves a notebook dedicated to your baby! Keep track of sicknesses, infections, medicines, antibiotics, pharmacies, and also ALL of the questions you have for your doctors! Take it with you to your appointments so that you can answer their questions and remember yours!
In sharing with you the links to some of the products on the supplies lists above, I may receive a small commission from Amazon for the referral link. I felt weird about doing this and considered very strongly to NOT sign up for the Amazon affiliate program. But I wanted to share with you all where we get these items and which exact items we use. Also, I figured I could use any money made to pay for the cost that we have been paying out-of-pocket for this website. $168 a year. If any extra is made….which I doubt…we will donate it to the PCD Foundation.