Medical Refresher Course

    Although the official "Trach Awareness Week" has now come to an end (May 19-25 this year), her whole blog is Emma McKenzie Awareness, so I figured it would be a great time to talk about the Ambu bag and how we would "bag" Emma if she ever needs it ~ but hopefully she won't!! Bagging her is basically like giving CPR but through her trach and without chest compressions.
   Once in a while Michael will start asking me medical questions regarding Emma's care or quiz me on what I would do if something went wrong and he wasn't around to help. To be honest, I would always call him before calling 911. He is extremely knowledgeable when it comes to her care. I'm pretty knowledgeable. There is a lot we have to know how to do, because even though there is a fire station less than 2 miles away in both directions of our house, that could be 5-10 minutes between Emma starting to have an emergency and the EMTs having their hands on her inside our house. It is very important for us to know what to do, and even the nurses and respiratory therapists would ask us what we would need to do in certain situations before Emma even came home from the NICU, such as what we do if her trach comes out. (The answer: Just put it back in! Sometimes that happens at night during trach care when her neck ties are off while Michael is cleaning her neck. If she coughs hard enough or leans back too far when I'm not expecting it or she suddenly pushes my hand away while I'm holding the trach in her neck). We were told that one family's baby was ready to go home from the NICU, however, the stay was extended because the parents were not comfortable enough yet to take care of the child on their own. I'm not sure if that baby also had a trach or what other medical problems the baby had, but a lot can happen or go wrong in a couple very short minutes.
   This is the case with any family! Every parent should know CPR, especially if they have a pool or live near a body of water. There have been too many 911 calls where the child dies because all of the family members are too busy panicking and yelling at each other to listen to the directions of the emergency operator and actually help the child! Sometimes it's too late because of how far the closest fire station is from the location, or because the ambulance has to actually stop at every intersection since too many drivers aren't paying attention to their surroundings.
  Anyway, so the other day Michael asked me what I would do if her ventilator broke or stopped working and Emma couldn't get the ventilator breaths she needs. My first answer was to see if she could breathe on her own with just the trach. I would disconnect the vent circuit and attach an HME (the humidifier piece with a filter on it so she wouldn't get dust or dirt in her open trach). From the many times we disconnect her vent to get a shirt over her head or to dump out the condensation water from the tubing, or when we switch out the vent tubing to a clean one every 10 days, she does really well and even laughs and pumps her arms in a fun way. But since we were talking about emergency situations and not just about how well her lungs are growing, Michael asked what I would do if she wasn't breathing well on her own and began crying and turning purple.
  I said I would get the Ambu bag and basically "be the ventilator" for her, squeezing the bag every few seconds to give her another breath. Michael asked when the last time I practiced that was. There has only been one time we thought she might need to use it (last summer, because we were away from the house for more than 6 hours and the ventilator batteries had all run out --> you can read more about that in the "Local Daycations" post) and that day Michael was in the back of the car with her. I admitted that I had not practiced it since she was still in the NICU. And that might have been even before we went to Michigan for her big 3D airway splint surgery!
   First, I made Michael run through all the steps that are needed to switch the ventilator over from the stand with the humidifier to the stroller (or the ventilator backpack, which will probably rarely be used due to it weighing 30 pounds, plus 16 more pounds when carrying Emma). Instead of just telling me what to do, he had me tell him what I thought I needed to do for each step before actually doing it. I like that; I'm a hands-on learner. And I also wrote down each step again. I originally did that after Emma came home from the NICU, but lost that paper somewhere in the house. **By the way, the reason I am rusty on this part is because Michael always does it while I clean out the suction machine and make a fresh bag of formula for her. However, I did know it in March 2018 when we were taking Emma on her stroller rides around the NICU, and I was also able to figure it out in January 2019 in order to take Emma on a walk when Michael was not home one afternoon.**

^^ Above you can see a couple pictures of how the tubing looks when it is just attached between Emma and the ventilator, without filtering through the humidifier. The bottom photo was Emma's first time at the Florida Mall in Orlando. We went there when my best friend, Mia, was visiting at the beginning of the month! Even after everything on the list I wrote down, there are a few extra steps before leaving the house:
   -- put an HME (Heat and Moisture Exchanger) on her so her throat doesn't dry out
   -- get the battery packs and spare trach (in case somehow the one she is wearing comes out all the way and then falls on the ground or gets dirty)
   -- take the feeding pump attachment that usually stays on the pole by her crib, and hook it on to the handle part of the bucket next to her so we can attach the feeding pump

   Now on to the Ambu bag part ~ we keep it under the stroller by the front door, but there is also another one, which is bigger and seems to be more for adults, that we keep in her bedroom closet. The toddler sized Ambu bag in the stroller is ready to use and has her "settings" on it so we wouldn't have to change anything if needed in an emergency.

  Emma very rarely uses oxygen anymore (hooray!), but we still always have the air concentrator on at home and bring an oxygen tank with us when we go out. The Ambu bag does not need to be attached to oxygen in order to work, however, the green part on the end is where we would attach it to the oxygen system (and turn that up!) if she was really having a hard time breathing. When we practiced the other night we did not connect it to the oxygen.
   If you see in this photo directly below, there is a red circle with the number 40 and a white tab under it that says Override with two caution triangles. If the pressure gets too high while squeezing the bag to give a breath into the lungs, the red circle can pop up to release some of the pressure. However, if the override tab is pushed up so it goes on top of the circle, it blocks the circle from releasing any extra pressure and it could puncture a lung and cause a pneumothorax (collapsed lung)!!!

  As for mentioning her "settings", this red knob on top adjusts the PEEP, which is how much air is needed to fill her lungs at the end of an exhale. Emma has been on a PEEP of six since we flew back from Michigan at the end of February 2018. Six is a great level for her to be at since five is the lowest it goes. As you can see, the knob is just past the five. The Ambu bag is then attached to the end of the trach to begin CPR (manual breaths given by squeezing the bag).

 ^^ Emma being a big girl and helping Daddy squeeze the bag. :)

^^ Mommy's turn to practice! 

    The other way to do it, which would be difficult for only one person to do, is if her trach came out all the way and we couldn't use the spare trach for some reason (if they both got dirty), we would put this plastic piece over her mouth and nose completely and attach the Ambu bag to that. BUT her trach stoma/hole would have to be covered the whole time to make sure the air goes into her lungs and doesn't come straight out of her neck. That wouldn't do her any good. We would put a piece of gauze over her stoma and then tape it down really well. Again, this would be hard for only one person because you'd also need one hand to hold the piece over her mouth and another hand to squeeze the bag to give the breaths. And possibly a third hand to hold her arms down!! As you can see, she was trying to grab the face piece and we were holding her arms down, just for the picture. The piece that would fit on her face is still wrapped up because we wanted to keep it sterile. Below you can see the unwrapped baby piece that no longer fits her face so we threw it away the other night.

   Today I was laughing when Michael was talking about why we would ever need to bag her with the piece over her mouth and nose. I joked that the trach she's using would have to literally fall in the mud, and then with butterfingers we also drop the second trach in the mud! His scenario was that if we were outside and she got stung by a bee and her throat swells up and the trach won't fit back in, then we would have to tape the gauze over her stoma and bag her with the mouth piece. Luckily those scenarios all seem like unlikely, but it could happen, so we have to be prepared for anything!
   There is another big safety scenario that I wrote about last month, talking about what we would need to do if there was a bad storm or hurricane, causing the power to go out and how we would need to use the generator. We had to get one before they would let us bring Emma home from the hospital due to her having so much equipment that requires constant electricity. This is not an Amish baby! You can read that by scrolling to the end of Emma's "Roadtrips & Preparation" blog post.