Cali relies on her trach and feeding tube for life. And as most parents with children who are dependent on life-sustaining equipment, Falesha both loves and resents it. Our children would not be alive today without them, and yet we still can feel annoyed and resentful towards the hassle and fears they bring.
In this fun episode, Falesha advises NICU parents to take training seriously, shares both the how-to and the benefits of traveling with equipment in tow and laughs at the fact that we as parents are dependent on the machines too, but at more of an emotional level.
This episode is being rebroadcasted from Ep. 66 in Season 4.
Falesha Johnson 0:00
Our pulmonologist said, "Take her outside. Go for walks. She needs to feel fresh air. Obviously, do activities in a way that's safe but please continue to live." So that planted the seed.
Madeline Cheney 0:15
Hey, you're listening to The Rare Life. I'm your host, Madeline Cheney, and today we have Falesha has a special topic episode, all about machine dependency. It may sound a little dry but it really isn't. This was a really fun conversation. Falesha is really passionate on the topic and it is contagious. She talks about the importance of taking training seriously before discharge at the NICU, for our NICU parents out there. The ways she and her husband Rome have prioritized living life and traveling with all the medical equipment, Cali has both a trach and a feeding tube, and the duality of emotions when it comes to our children's machines and equipment. I don't care who you are, I feel like it's guaranteed to be some version of a love-hate relationship. I love that, by the end of the conversation, we can clear that our children aren't the only one's dependent on their machines. We are too, but on a more emotional level. They're certainly not all bad. I hope you laugh along with us. All right, let's jump in. Hi, Felicia, welcome back to the show!
Falesha Johnson 1:38
Thanks, glad to be back.
Madeline Cheney 1:40
Awesome. So, I'm really excited for this episode, where we get to dive into children that are machine dependent or have life-sustaining machines and equipment because I'm pretty sure, for most of us listening, that is our life. And so, this is just a very relevant episode. I'm really grateful that you're willing to come on and share things that you've learned. To start off, I would love for you to give some advice to parents that may be listening and may be still in the NICU and know that they're coming home with things like a trach, or feeding tube, or oxygen, etc. What advice do you have for them that you've learned from your experience?
Falesha Johnson 2:30
When we were in the hospital, our doctors told us that Cali would probably need a trach, and that will come with training and nurses. I just remember thinking in that moment, "Nurses?! Training?!" I coudn't wrap my head around it. They said, "Yes, it's going be hard work but she's gonna thrive. Having a trach, she's not over-stressing and over-exerting all this energy to breathe, and she can breathe comfortably. It will allow oxygen to go to her brain, it's going to allow her to grow." And that's all I needed to hear. I said, "Okay, this is the best thing for her. I'm in." So, once we were in, we got this pamphlet of, "Here's everything you need to learn and know." I remember thinking, "This is so much!" And I was on maternity leave but my husband wasn't so we have two totally different experiences around learning how to deal and handle a kid with a trach. One thing we both decided to do was go all in on her training. When it came to her training, we took it very seriously. We not only were taught how to do certain situations, whether it be trach care or trach change, we were hands-on when we were in the hospital. So, for the parents who have children who are in the hospital and you're learning some of the different things around trach and vent, make sure you get that practice while you're in the hospital, while you have nurses and RT around you to troubleshoot certain situations. Every single time I did it, it just built my confidence. So, when you come home, you have that high level of confidence that, "I can handle this because I've done it multiple times." And I've talked to other families who said, "We would get cleared to do one item and practice on our daughter and then, that was it. We didn't do it again because they were saying the doctors didn't ask them to do it." And so, I spoke up, I was like, "Can I do that?" And they were like, "Oh, yeah!" And I've had a nurse say, after maybe about a month of seeing her about four or five times, and that month she goes, "I just want to say, I've never had any parent ask me if they could do trach care as often as you have or asked me questions while I'm doing everything." And I'm like, "Really? I thought I was bugging you and being overbearing." And she goes, "No, I could tell you're coming from a place of, 'I want to learn.' Please keep that, please keep that energy and that mindset of learning." So, I would say to keep that, definitely be hands-on and focus on that training aspect of it because that will help.
Madeline Cheney 5:12
Yeah, that resonates with me so much. I was the parent who was not asking to do things, I felt so timid because it's just so weird. You have this child and you're like, "I'm going to be their parent." And then it's like, "Well, actually, they have these medical needs and these professionals need to do so much of their care in the NICU," and I was floundering, like, "What is my role as a parent?" I stood back, and when we took my son home, he came home with a feeding tube, actually through his mouth so a G-tube, and we did not know what we were doing. I thought we did, you know, you do it there and you're like, "Okay, I think I got it." And then we went home and it was a nightmare because we didn't know what we were doing. I was like, "We shouldn't have been released. We shouldn't have been sent home." So, I just love that you asked to practice.
Falesha Johnson 6:04
And I thought, in the moment, "I'm doing the most." And to hear that doctor or that nurse say, "I appreciate this." I'm like, "Okay, this feels good. Thank you for confirming this and reaffirming this because now I feel like I'm on the right path." I feel like, even though I felt pretty confident in the hospital, home is so different. So, prepare yourself for that. Find nurses, and I know it's hard but one key thing that I did when we were interviewing our nurses is, ask them how they felt in emergency situations and how they handled high-pressure situations because you get home and you don't have a full team of doctors. In the hospital, if there's an emergency, another nurse can come in the room, so you can have too, and then a doctor can come in the room. And as a parent, you can sit back and monitor. When you're at home, it is that nurse and you. Finding someone that is competent in all of the machines and has handled difficult situations is important. Asking them, "Hey, how do you feel in an emergency trach change? Have you done one? What are the steps that you would do?" So, we're actually in the moment right now, my daughter, the tie parts on her trach tie fully came off an hour and a half ago. She started coughing and she made this gargle noise. My husband and I were kind of thrown off, like, "What is this?" And the nurse quickly put her hand on the trach and noticed that the tie was off but she was so worked up. She was like, "I'm doing this, can you go grab the vent? Can you grab this?" I ran and did that, my husband was the support system for her, giving her suction. And how she handled that situation, I felt like, "We have her. That's our comfort blanket, she's amazing." And to know that she's totally capable to handle a situation like that but to have those scenarios of knowing who does what and whose best role is what is reassuring. I ran track in college so I'm like, "I'm the runner. You need something fast, I'm off to do it." My husband is the logistic guy, he's very hands-on, so he's very observant and he's like, "Okay, we need this, this, this, and this?" And I'm like, "Okay, where do you want me?" So, having nurses that are very confident in what they're doing because as you mentioned, you get home and it's a different setting, it just elevates how extreme certain situations can be.
Madeline Cheney 8:43
Yes, totally. I know that it varies by states too, whether or not you can even qualify for home nursing, which I think is completely ridiculous. And I'm just thinking right now, so I said he doesn't have a trach but he actually got close to needing one, and just picturing these other parents in our state not having home health nursing, with something so life-sustaining and so sensitive, I'm just floored. I guess that's a whole other can of worms.
Falesha Johnson 9:13
I'm learning about that, too. The fact that some people get denied for coverage or the hours, like our hospital was very serious about not leaving without nursing support. That's hard when you're in a pandemic and there's a shortage of nurses, so I know some people who were in the hospital for months because they couldn't find coverage. We were very thankful it took about six weeks to find our team, and I was really proactive about it. I did a whole video, I printed out a flyer and put it in nursing in our Seattle Children's in their break room because they were letting go of travel nurses because of the pandemic. I thought maybe I could find someone who just got let go and wanted to work with our family. I was trying to be as creative as possible. I went a little crazy, so I made a video and then I typed in, '#Seattle nurse'. I reached out to the first 10 I saw. I said, "Hi, my name is Falesha, here's my daughter's story, if you have anyone in mind, please share the video with them." So, one of them said, "I'll share this to the Seattle Facebook group for nurses." I'm like, "Oh, okay." And then we found one of our nurses through that. That kind of started our support but Seattle Children's said, "Because I worked full time and so did my husband, unless we were willing to quit work and be her caregiver, they probably would have led us home but because we couldn't, they said we had to have at least four nights covered since that was the big part about needing your sleep to actually function and then care for your child.
Madeline Cheney 10:57
Oh my gosh, that's amazing, I love all the stuff you did. That's so cool and I hope that some parents listening are getting ideas of things to do, either to set up your team for the first time or maybe even like, "Hey, I don't feel super confident in our team currently. I'm going to switch out a few of those players and make it the best team possible." I love that. Well, kind of moving on, so you, Rome, and Cali traveled together and do not let all the equipment hold you back. I would love to hear your advice and tips and hacks and all the all the good stuff about traveling and living life with machines.
Falesha Johnson 11:42
First, we got encouragement from our team at the hospital. We say, "We're going home," and it's a pandemic so we went home in June 2020, after being in the hospital for five and a half months, and our doctor, our pulmonologist, said, "Take her outside. Go for walks. She needs to feel fresh air. Obviously, do activities in a way that's safe but please continue to live." That planted the seed. And then we got home and we realized quickly that she liked water. She was loving splashing and we thought "Oh, it'd be so cool if we go to the lake," and our nurse was like, "We can." It's a trach and a vent and she was like, "We can still do it." And I was like, "Okay! You say we can. Let's do this!" And so, we have her vent, and she found these straps, and so she's like, "We'll put the straps on our back so we'll have a backpack, we'll clip her circuit to this little floaty we have, and we're going to get out there and do it." And so, we did, we took one trip to the lake, we had Cali on this little floating toy, and she loved it. She took a nap in it, that's how much she loved it, she was fine. And then from that day on, we were like, "We can do things, we can do more." Ever since then, we've just continued to have that motto of, "This trach will not hold us back. We're going to continue to show you the world." I feel like every time we travel and go somewhere, she comes back with this new milestone. It's just how good being outside in exposure and seeing different things help her in her everyday life. So, some of the tips I have when it comes to just traveling and living life with machines, it really comes down to communicating with your nursing staff. Whether it's your nurse, maybe you don't have nurses and it's your partner, the communication. So, "Do we have everything we need? We need to make sure we've got her emergency bag, we've got a backup vent, we've got oxygen." So, we have all of that close by, and we have a little sheet too, now that we've been traveling, we traveled to San Diego recently, we created a packing list. When it comes to trach care and G-tube care, we put everything in a bag. So, "Here's one for every day we need it for. Here's the G-tube care. Here's bath time." We were very organized and that makes us feel like, you know that feeling when you get to the airport and you're like "Oh, I forgot something. We don't have that." We're like, "We have everything." And so, our nurse will pack it, then the second nurse will check off and make sure we got everything, and then we're communicating with them. I was like, "Okay, do we have this, do we have that?" And so that's one big thing, is just being organized and making sure you have the backup machines and everything. That's been key for us.
Madeline Cheney 14:45
I love that, and then you can really relax while you're there, I'm sure, rather than being like, "I think we have the backup vent or the suction machine," and you could be like, "I have everything," like you said, none of that feeling.
Falesha Johnson 14:59
Exactly. When it comes to traveling, we did more local activities. I feel like, as the months went by, we ventured further and further away from home. We went for walks, "Okay...that went well." Then we went for a longer walk, "Okay." Then we went for a car ride to the lake. "Okay." Then we went for a two-hour car ride to the lake. And then we went for a three-and-a-half car ride to the ocean. And then we took a plane. Baby steps to see that she does well in a new environment. Seeing that your kid is stable, seeing how they react to certain environments, it's like, "Okay, they can handle this." But you're not going from being home to a sudden flight three-and-a-half hours away. Like, that big jump is too much. And knowing that we waited, we waited for almost a full year to do a flight, it was nice to see that Cali was stable enough. So, we had her on the vent during the flight, we checked with the airline to make sure we could have everything carry-on overhead, we called the airport in advance to see what their steps and procedures were to get through the airport, how much time when we get there early, she's on a G-tube, we want to make sure we have enough time to have her fed before we got on the flight. I picked the flight, I knew that it was like her nap time and I picked a flight that was two-and-a-half hours. We went to San Diego. So, just thinking through your child and how they react to certain situations is key, and just to build yourself up to bigger trips but definitely start off with smaller activities and venturing in your local town, and then venture off.
Madeline Cheney 16:38
I love that. Here's a question. So, for parents who are listening right now and maybe are like, "Oh my gosh, that sounds like so much work." Or, "Is that really worth it?" Tell us how awesome it's been for you guys to not be held back and to have these experiences with her, and just as a family.
Falesha Johnson 16:57
It's worth it. It's hard work, yes, it takes a lot of prep work, I will say that, but when we're there, it truly does feel like a vacation. To see your child light up, we went to the ocean and we walked out into the water, she was like, "Oh, it's kind of cold," and then she was jumping. She sat, and the ocean waves came up on her, for about an hour. She was smiling and clapping, and to see that joy on face was just like, "Wow, this is worth it." Also, to see other families reach out to us and say, "Because you went on that trip and because we saw you do something like this, we feel confident we can." That was the other bonus to it, to feel all these families say, "I'm inspired that you guys are continuing to live life," whether they had kids with medical needs or not. It just was so gratifying. I mentioned, we go and expose to the world and then we come back and we see her do new things. So, before this, she would not sit up in the bathtub, she loved the water but she had a little chair. We got back home and she's been sitting up in the tub and splashing. I think that exposure to the ocean, it did it for her. Being around a lot of new people, like, on the airplane, at the airport, that was a lot. I've been seeing her be better with strangers and new people in different environments. So, you will see the benefits cognitively in your child when you expose them to new environments.
Madeline Cheney 18:31
I love that. I think there are probably a lot of benefits to kids traveling, whether they're typically developing or not but like we talked about in the previous episode, we're just more aware of that, we work more with them, we have therapies to help them reach their potential, and so I'm sure that, just like any other milestone, that probably is just so gratifying, to watch her thrive.
Falesha Johnson 18:56
Yes, it is. We're coming up on a year being home and my husband and I talked about doing a homecoming party of some sort. We take the time to sit back and reflect, and I do these monthly milestone videos on YouTube for Cali, and to see her thrive and to see all the amazing things she's done in a month and in a year, we're just in awe. Sometimes I'm like, "I can't believe she's doing it," and sometimes I'm like, "That's my daughter." She just keeps showing up and showing out and so I'm not surprised by anything she does now. I'm just more seeing her and waiting, like, "What's she going to do next?" She's just so amazing and I really do hope, as she gets older and gets to watch back, our story and the videos and just the journey we've been on, she realizes, "I'm capable of all things. I can do big things and my parents have always been there as my advocates, my cheerleaders, to show me and put me in a position to do great things," but at the end of day, it's all her. We're just here to help her but she does all the work.
Madeline Cheney 20:09
Oh, I love that. I am telling you too, I'm sure that she will look back, and maybe as an adult, when you become a parent and you're like, "My parents did a lot for me," and can kind of realize that. I'm sure that even that will be such an example to her, like, "Look at what my parents did." Even, traveling, with all it entailed, to travel with me, and I'm sure she'll be inspired by that, too, and have that as an example of her capabilities, and that she can go and do whatever she wants, she won't be held back.
Falesha Johnson 20:38
That is so true. For me, I became a parent and I called my mom, "Oh my goodness, thank you, mom. This is hard work." You have those moments where you complain about them, and I'm like, "No, you guys are awesome." Being a parent is like the most selfless thing you could do, and everything you do is for your child, and then you add the medical aspect of it and we go through a lot of surgeries or hearing doctors say, "Your child's not going to be able to do this." And we just leaned into our child and we're like, "Nope, we're not going to put a box or a limit on what they can do." It takes a different type of work ethic and mindset to be a medical parent but it's so rewarding, and I feel like that with everything in life. Nothing comes easy. Anything that's worth having takes hard work and our children are worth having, and they're going to live lovely lives. It's going to take a little hard work but it's going to be that more satisfying and rewarding when we see them do one phenomenal thing.
Madeline Cheney 21:44
Oh my gosh, yes. I feel that so much. So, to wrap up, our last section is the emotional aspect of having a child dependent on machines. There's a huge range of emotions, maybe resentment towards them and their dependency and tons and tons of gratitude for them and the life that they give your child and maybe fears of something going wrong with the equipment, and the feeling of weaning off of them at some point. So, I would just love to hear what has your relationship with the machines been like, and how has that evolved?
Falesha Johnson 22:23
Yeah, definitely grateful for the machines and the fact that because they're here, they're able to help my daughter be comfortable and do everyday things that we do. And just to breathe, and then to see her weaned off of them, I'm like, "Okay, I'm ready for you guys to be done. I'm ready to put you to the side." It's kind of nice when your child starts to wean off and you're like, "Ah, we don't have to depend on this machine." It's so hard because you love technology and the fact that they're there to help your child thrive but you don't want them on it forever. That's kind of where I stand. I know there's parents out there who's kids will be on it for a while. And so, there is this balance of emotions around it when it comes to being dependent on a machine. It definitely changes how you live and how you function and how you move because it's like, "Is it charged up? Do we have a backup one?" There's so much, that there is that fear of, "What happens when it's not working properly?" But I will say, for myself, early on, before I got home, I had to lean on therapy and we had therapy through the hospital, and expressing how I felt about being a medical mom and some of the fears I had about going home, and just having someone to talk to, it felt so good to be able to process my emotions in a healthy way because I do feel like sometimes, we bottle those emotions in. So, for instance, before I got home, our social worker said, "I want you to feel confident. I want you to feel relaxed and have fun when you're at home because your child can feel that when you go home. It's an intense situation. It's a new environment and your child's looking towards you to make sure everything's okay. So, if you're nervous, they will feel that energy." And that put intense pressure on me to almost fake it until I make it. I felt like I was starting to bottle that in. So, talking to a therapist and expressing how I felt and hearing them say, "It's okay to be scared and thankful. You don't have to be one or the other. You don't have to be like, 'I love these machines, they are amazing for my child.' You can also be like, 'I hate that they go off so often. I hate that they have to be on it.' You can feel both emotions." And so, I lean into that. It's an everyday process of like, "Okay, being one with how I feel about having a child who is dependent on a machine for however long she is on it."
Madeline Cheney 25:10
Yes. Oh my gosh, even talking to my therapist, she helped me learn, I think it's called duality of emotions. I can't remember if there's a technical term for it but that was so mind blowing because it's this tendency to say, "I'm feeling sad," or "I'm feeling grateful," like you feel like you need to have one emotion but I think recognizing you don't have to choose one emotion is so powerful. I feel like with machines especially, isn't that the epitome of a duality of emotions? With my son's G-tube, I was like, "I hate this thing. And I love it." Because without it, my son would not be alive.
Falesha Johnson 25:56
Yes, we are having a difficult time right now, with Cali's eating and her GI tract, she's not breaking down food fast. So, she has been having large emesis and throwing up. And so, that's a struggle but without the G-tube, she wouldn't be getting the right nutrients in her body to grow, and so it's just like, I love it but then it's also, like you said, it's a struggle having to deal with it. My husband was asking me, "At what point will she be able to just sleep through the night and not have to feed at night?" And I'm like, "Well, that's a great point. 'Typical' babies, probably around six months, having their day feeds." And then our doctor explained to us, "Well, she's not able to tolerate large volumes of food during the day so we have to have six feeds and have it throughout the night. And so, that's one thing but then there's also, it's nice to be able to put the pump in and catch the G-tube and go, so it's a struggle.
Madeline Cheney 27:00
Totally. There is this huge convenience with it too, even with my son's hearing aids, and this is different because it's not life sustaining but it is such a benefit, or convenience, where we pop out his hearing aids when he goes to sleep, like we're supposed to, and then we don't have to tiptoe around, and he doesn't even wake up, he doesn't hear us at all. There's definitely this like, "Okay, so, if we have another child, we'll have to be quiet while they nap. What's that going to be like?" It's crazy because it is really convenient in some ways.
Falesha Johnson 27:39
I was talking to Rome about this as well, and at some point, we'd love to have a second child and give Cali a sibling. Then I started telling him, "Okay, well, kids cry." Cali's trach goes through both her vocal cords so we haven't heard her really cry. She's got hearing loss and so she also has a BAHA, same thing, at night, sometimes I catch myself whispering and I'm like, "Okay, she can't hear me." The machines are going off and it's like, "Oh, it's not waking her up." And so, things like that. So, I was like, "Okay, you do realize, our child comes home and we're going to have to be up feeding them throughout the night," and he's like, "Oh, maybe we can get a night nanny." And I'm like, "...Okay." So, when she does have those moments where she's up from three to five, I'm like, our night nurse is helping, we're not waking up in the middle of night. I'm like, we're going to be so tired. Lots of crying. They're going to wake up at every little noisy we make.
Madeline Cheney 28:43
It's so weird. I even have an older child, I've done the 'typical parenting experience' and, in a lot of ways it was easier but, in some ways, like trying to breastfeed and stuff, I didn't even try with Kimball because he couldn't eat by mouth. And so, there are things like, "Can I be a typical mom again? Am I capable of this?" Which is so weird because I'm sure that baffles 'typical parents' because there like, "Your life is so much harder!" But there are things that are very convenient about it.
Falesha Johnson 29:17
Yes, I agree. And that's been one nice thing, to talk to you and talk to other parents with medical children, it's like, you get to have that community and we get to talk about our everyday life, and you understand what I'm going through. I appreciate you for just having me on and being able to chat about this because it's so healthy to be able to talk about your life and not feel like you're an inconvenience to somebody or they won't understand.
Madeline Cheney 29:45
Oh, totally. And that is the whole point of this podcast, is to be able to have that solidarity and be like, "Ah, they totally get it." And I'm sure, throughout the episode, I'm sure that so many parents have totally been there and have felt so many things that we've talked about and are hopefully inspired by your tips on living life and getting out there. I am just so grateful for you coming on and sharing. Thank you so much.
Falesha Johnson 30:14
Thank you so much for having me. I just appreciate being here and sharing our story and you're inspiring me as well. I'm learning so much about different families and different syndromes, and I think it's just wonderful the work you're doing, and how everyone's being educated and inspired at the same time.
Madeline Cheney 30:33
Thank you so much. Join me next week as I chat with a medical doctor about what your doctors want you to know but don't tell you. Don't worry, this one is definitely more on the soul level and I think you'll really love it. Don't miss it. See you then.