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What is it like to have a Trach?

11/7/2018

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What is it like to have a trach?


Occasionally, the question of “does someone really need specialized training to care for a trach patient” comes up and parents ask how to get the answer across to these friends and family who have asked...

Some people need a visual to understand the seriousness of a Trach, so you have to put their imagination to work. You can tell them to think about it this way... if you put tape over the nose so that they couldn’t breathe through it, then place a piece of tape over their mouth with a small hole in the center and then place a straw through that hole... that straw (represents the trach) would be the only way that they could breath... they would be ok to play and go about their day doing all the usual things in life, BUT then what if you took that straw out of that hole? The hole would still be there but there wouldn’t be anything holding that hole open... it would become harder and harder for them to get air through that hole because their lips wouldn’t be able to maintain that same opening without the straw so they would struggle to breath... if they were the only one that knew how to replace that straw so that their child (for example) could breath normally, would they allow their child to go with someone who couldn’t replace that straw so that their child could breath... so that their child could live to be able to be a happy kid who could play, run, and grow up... so that their child could live to go to school and get an education... would they let them go with someone who wasn’t able or trained to replace that straw? Is a birthday party, or whatever it may be, really more important to take that child to for a couple of hours than their life? Is watching other kids eat birthday cake and open presents really more important than that child’s life?

This may be a bit of a graphic description, but if someone doesn’t understand how serious a Trach can be or what a Trach does then this is essentially the same thing.

~Tonya
​Founder

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A Reminder of the Scary Moments

11/5/2018

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When you do things for a long period of time, you get into a routine or pattern like you are coating through it. But that can change within a matter of minutes. This can happen a lot while living the Trach life. You think you are past the scary moments of seeing your child struggling to breath for one reason or another and then at any moment they decide to throw you a curve ball just to make sure you are paying attention. It’s like they don’t want you to get to comfortable with a routine or with life itself. They like to give us reminders that even though they can be stable and able to do things on their own, that can all change in a second. Today I was reminded how quickly circumstances can change and just how precious life really is.

My daughter is 10 years old and has had her Trach since she was 3 weeks old. She has been fairly stable most of her life with the exception of a few illnesses/viruses along the way and that of course is just part of Trach life. There are always big and small set backs that occur, as well as times when you are “coasting” through life with your own routines. It is important to do things within the Trach life that work best for you and your trachie. Just like everyone else we have certain ways that we do things because that’s just what works best for my daughter.

Today after giving her a shower, we were doing our usual routine of changing her Trach, g-Tube care, getting dressed, and all that fun stuff. While I was changing her Trach, she was playing around, covering her stoma with her chin and blowing air out of it. We were laughing and being silly, then in a split second everything changed. She began to struggle to breath and coughing. After several tries, she coughed out a plug (mucus chunk that blocks the airway) larger than she has ever had in her entire life. In those moments, the smiles and laughter melted instantly. The silliness turned into shock. She recovered quickly and was back to her playful self within a few short minutes. I, however, was not. All of the fear and anxiety that use to haunt me in the beginning of this Trach journey came rushing back. I know that the circumstances could have been dramatically different. Although I never really thought we were completely “out of the woods” from the dangers of plugs and other issues that come with the Trach, it wasn’t something I worried about as much as I did in the beginning.i mean we have been living the Trach life for 10 years, we’ve got this... until that moment when you get hit with a ton of bricks that stop you in your tracks.

When something like this happens, after the shock wears off, you reflect back to those moments of struggle and fear. You think about the “what if’s” and the almosts. You think about what you could have done differently. You think about if you had done something different would the outcome have been good or bad. The hours and days after an episode like this can be pure torture for some parents. Yes, I am happy that my daughter is good, but that doesn’t stop my mind... my thoughts continue to go back to those few terrifying moments trying to analyze and break down each second, not to dwell on it... but instead to figure out what I can do better if this should happen again.

~Tonya
Founder
Moms of Trach Babies
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Choosing A Trach Life

11/3/2018

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Choosing A Trach Life

Most often in trach life a parent has a story of how their child came to need a trach and the adjustment that ensued thereafter for their entire family. Our story is a little different. For us, we chose a trach life. Really, though, we chose a life. The trach was part of the package, though.

On the weekend of my 35th birthday, I received a text from our social worker that said “baby girl, micropreemie, cpap, are you interested?” I talked briefly with my husband to see whether a cpap was something we would be willing to consider. He agreed to find out more, and I made the phone call that changed the course of our lives forever.


Let me introduce you to our family, our lives, and our purpose for doing what we do. My name is Meredith, and I’m a 36 year old wife, mother, homeschool teacher, friend, advocate, and kisser of all boo boos. My husband, Michael, and I married at 19 and 20 years old. Three years later we had a son, and 2 years after that we had a daughter. At 2 months old our daughter was diagnosed with a non-rare, non-life threatening chromosomal condition that rocked our worlds in a hard way and then in an amazing way. Our daughter had open heart surgery at 5 months old because of an associated condition and then she grew and achieved goals and developmental milestones at an amazing rate, growing and changing before our eyes.

Our lives could have gone on from that day in the same typical progression that they had been headed, but instead, the diagnosis of Down syndrome changed our path. That diagnosis was the catalyst that God used to lead us to recognize there was a high need for children with significant special needs to be ADOPTED. When our daughter was 2 years old we brought home two more children with Down syndrome from Ukraine. Over the 7 years after that adoption we had a biological baby, adopted a child with Down syndrome from foster care, adopted 2 more children- one with Down syndrome and one with cerebral palsy- from Ukraine, had another biological baby, adopted a child with Down syndrome from a foreign adoption disruption, and then had our 5th biological baby. Our lives were wrapped up in the love of Jesus for these children who He was leading us to who had no parents, no future, and no hope.

In January of 2016, with a 14 month old baby on my hip, I called the attorney that my social worker had sent me to, and I said “please, tell me about the baby you need a family for.” The first words out of her mouth drew me aback. “Tracheostomy.” “Ventilator.” Wow. Yikes. How could we do THAT?

I listened and tried to hear, but my mind was stuck on the idea that this baby had a trach. My husband would NEVER go for that! Not only that, but we had 11 children. How could we take care of a baby with a trach while effectively parenting all of our other children? After all of the information was given to me, I was honest with the attorney and I said I was really unsure. I needed a day to pray, talk to my husband, and see whether this was something we could pursue. I hung up the phone with a sense of longing. I talked to my husband and somehow, he didn’t shut the idea down. I called the attorney back. “Can we come meet her tomorrow?” And that was the beginning.

After driving 3 hours and spending some time with this 5 month old baby girl, both Michael and I knew that the trach, this medical piece, was a TINY part of the sweet baby we’d met. We knew we would either feel overwhelmed by the trach, or overwhelmed by love. For us, it was love. This was a baby who needed to live outside of a hospital. She needed a family. We could be that. Her care, though scary and serious and consuming, was not overwhelming like we were expecting.

Over the next 24 hours we prayed and asked our agency to also seek God. In all honesty, part of our prayer was to take this from us! We were busy, we were tired, but we knew for US it would be a YES. We asked God to have the agency tell us “no” if this baby was not to be ours. Our agency workers called us on Monday morning before our kids were even down to the breakfast table and asked if we had talked. They were sure the Lord had laid it on their hearts that this baby was to be ours. Tearfully, I agreed to the same.

Fast forward a little bit, and our sweet Nya’s adoption was finalized a year ago this month! She just now turned 2 years old and is an amazing little blessing. There have been scary moments, and there are definitely times where it’s difficult to have a big family- like hospital stays and sicknesses. All in all, though, our sweet Nya has shown us that having a big family means she has lots of siblings to play with, to learn from, to encourage her, and to learn FROM her. We’ve had another biological baby and he’s now 9 months old. As he pulls up on the outside of the playpen, Nya pulls up on the inside. Our 12 year old with Down syndrome and many other significant needs joins in and claps with both of the ‘babies.’ Our 3 year old climbs into the playpen with baby dolls and a tea set. Our 9 year old calls out to Nya and says “say Mama!” until her mouth can mimic and Nya tries to push her voice through to make some sound. Our 14 year old suctions her trach as I’m changing a diaper next to them, and he smiles and plays with her all the while. Our 6 year old sings her songs from the theater class she’s taking and Nya bounces along with her. Our 15 year old snuggles her on her lap while we take a family photo. Our 13 year old rolls over to be near her because he isn’t able to sit up on his own, but he enjoys her company down by him. Nobody has to be asked to “please sacrifice your time for your siblings.” No, our children LOVE to have a big family with diversity in all of their needs and their abilities and their gifts. ALL of our children have benefitted from one another’s differences.

We didn’t know that we could handle trach life, but we knew that we could handle whatever life God led us in to. We didn’t just get handed this. We chose to live a trach life. Really, though, we chose to Love a life, and that life happens to have a trach.

Meredith Cornish

Follow our family journey on Facebook: www.facebook.com/thecornishfamily

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Being A Part of Our Community

11/2/2018

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If there’s one thing really cool about being a part of the medically fragile children’s community… it’s US.

One thing I’m pretty sure about, is that the vast majority of us didn’t sign up for this gig. I mean… who WOULD?

Gone are the dreams of an idyllic childhood, carefree family vacations, the white picket fence, typical childhood milestones and rites of passage.

We have shattered dreams. And isolation. And doctors. And hospitals. And lab tests. And insurance companies. And MediCaid. And therapies. And surgeries. And home-based ICUs. And nurses. And DMEs. And equipment. And supplies. And IEPs. And PTSD.

Many of us also have broken families. Derailed careers. Wrecked finances. Broken hearts.

This life is NOT easy.

But we have our kids. And we have each other.

When things get tough, there are no stronger supporters than people who are in the trenches with you. We have family, and friends … and don’t get me wrong, they are well meaning. But that kind of support can be short-lived. When crisis hits, they are there and offer to help, but as the severity recedes, that support tends to fade. You see, the thing is, that with us, is it’s NEVER over. We do this 24/7. And no one really gets this but us. Our extended families and friends only get an occasional glimpse of what we are dealing with all day long, every single day.

Nowhere else, have I EVER witnessed the kind of support that our community gives EACH OTHER. If there is a community that knows how to pull together, and get shit done, it’s US. And the funny thing is, WE are the ones with the least time and energy to do that. But we all know how hard this life is, and when someone needs a hand, we jump in and help. Because we’ve ALL been there. We know the fear of a new diagnosis. We know the uncertainty of medical emergencies. We know you’ve had no sleep. We know you don’t know how you’re going to get through today, much less this week.

We don’t hesitate. When families new to the journey seek guidance, seasoned veterans become shaman to the newly initiated. When a parent seeks advice on an unfamiliar diagnosis, fellow families chime in. When a child is in critical condition, fellow parents lend support with visits, gift cards for food, prayers and anything else they can provide. When a child is desperate for certain medical items, we all take inventory and send them our spares. When disaster strikes a region, we rally, organize, pack up our extra supplies and get them to families in need. When one of our kids earns their wings, we all cry in unison.
​
II would never wish this life on anyone. But what I DO wish, is that people in general, could learn from us. Our circumstances have completely stripped us down to what’s real, and what’s necessary to survive. We are in it for love. And for each other. We are past the petty. We are past the bullshit. And we have embraced the “We’re all in this together” mantra. How can we take our collective experience make a difference in the greater good for everyone? Because it would be really cool, if everyone knew how cool it was, to be us.


~ Debra C.
Trach Mom
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RSV/Flu Season

11/1/2018

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As we begin the fall/winter season, I want to throw a little information out for you to consider before you leave your house each day. This time of year is also Cold/Flu/RSV season. This time of year can be a deadly virus season.

I use to say “oh it’s just a cold, I can still go to work” or “oh it’s just a cold, you can still go to school.” I tried to avoid germs, but it didn’t always work. When I was younger, I use to get a cold every time the seasons changed. It never failed, it always happened. I still went to school and to work as a teenager. I never thought twice about it. Then I had my teenagers who shared drinks and ate after their friends. I started becoming more aware of germs. Then came my precious girl and I became a germaphobe. Germs are ugly, nasty little creatures that can have a horrible impact on so many.

Did you know that a simple cold could land a medical needs child or even healthy kids in the hospital? Did you know that a cold can quickly turn into pneumonia in those kids, putting them in the hospital? Did you know that RSV (Respiratory Syncytial Virus) has the same symptoms as a cold? Did you know that RSV complications can have a major impact on a person’s life causing them to have respiratory related problems for the rest of their life? Did you know that RSV can kill? I think everyone knows what the flu can do, so I won’t even go there.

These are preventable viruses!!
  • Wash your hands often throughout your day!
  • Use hand sanitizer!
  • If you are sick, stay away from young children, elderly adults, and the medically fragile!
  • If you cough, use the inside of your elbow to cover your mouth!
  • Don’t drink or eat after someone!
  • Stay away from people that are sick!
  • Clean and disinfect surfaces!

You can never be too careful when you are trying to prevent potentially deadly viruses from spreading! These viruses are no joke. If you still think it’s just a cold, stop for a minute and think about your baby, your sister’s or brother’s baby, and/or your friends baby... do you want to be the one responsible for killing that sweet precious baby? Do think you could look your sister, brother, or friend in the eye and tell them you are responsible for their child dying? That you were the one who carried that cold virus to their baby who caught it and it turned into RSV only to kill their baby? I’m not being mean, harsh, or rude, I am stating the facts of what COULD happen.

I have seen perfectly healthy children get RSV and have to spend months and months in the hospital which led to them being trached or require them to be oxygen dependent for the rest of their lives. I have seen these viruses take the lives of more babies and children than I care to count. I have seen it every year over the past 10 years. Someone’s baby always catches them and someone’s baby always dies from them. Please if you do not want to get a shot or take care of yourself when you are sick... at least wear a surgical mask and some type gloves when you go out. Help me protect my little girl and the thousands of children like her because we as parents want our babies to stay healthy. Please keep your germs to yourself, we don’t want them.


#momabearadvocate #alwaysadvocatingforher #nostoppingme #lifeofatrachmom #proudtrachmom #dontbackdown #dontmesswithmybaby #snadvocate #MOTB #momsoftrachbabies #changeforher #ifyoucanthandleitSCROLLON #idontneedyourpermission


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Special Needs are Nothing to be Afraid of...

10/17/2016

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Special needs parents often struggle with a variety of different things while raising their special children. We all fight to make sure our special kids get what they need medically, physically, and emotionally. But there is one thing that hits close to home for me that I think most, if not all at some point, special needs parents deal with. I want people to not be scared of my child! I want them to look past her medical diagnoses, past her "disabilities", and see the actual person! They need to see her sassy charm, her funny personality, the beautiful little girl that loves to play, and loves people so much that she will wave hi to everyone that passes her no matter where she is at the time. My sweet girl doesn't think she's different from anyone else, but so many people treat her like she is just because they look at the disabilities instead of the child. So, my friends and family, please do me a favor when you see another special needs child remember to look past the disabilities and see the beauty of the child. Don't be the next person to hurt a child like daughter or a special needs mom like me.
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So sorry??

5/4/2016

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I am often told that people are "sorry" about Elly's medical condition. That a "child shouldn't have to go through that" or that they hate to see a child "suffer" or even it must be hard to watch my child "go through all of that". They may be trying to be nice or maybe they don't understand, but I can't stand it! I even hate when I tell people about her Trach and medical needs and they say they are sorry or "I'm so sorry to hear that". Ummm what are you sorry for that my daughter is able to breath, that I can suction the junk out of her so that she can breath better, or that she's a HAPPY child who is THRIVING and GROWING into an amazing little girl? Don't be sorry for her, cheer her on, applaud her, or learn something from her because she is amazing! She has fought battles that most adults never have or never will! She came into this world fighting and hasn't stopped. She's won the battles she's fought so far and probably has more to come but she's strong and stubborn enough to not back down! She will always have me as her #1 fan and a cheering section of many, many people! She has already made a difference in this world in her 8 years and I can't wait to see what she does in the future! She is my world, my inspiration, my hero, and my heart!
~TB

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A Special Needs Mom's Request

10/17/2015

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Special needs parents often struggle with a variety of different things while raising their special children. We all fight to make sure our special kids get what they need medically, physically, and emotionally. But there is one thing that hits close to home for me that I think most, if not all at some point, special needs parents deal with. I want people to not be scared of my child! I want them to not be intimidated! I want them to look past her medical diagnoses, past her "disabilities", and see the actual person! They need to see her sassy charm, her funny personality, the beautiful little girl that loves to play, and loves people so much that she will wave hi to everyone that passes her no matter where she is at the time. My sweet monkey doesn't think she's different from anyone else, but so many people treat her like she is just because they look at the disabilities instead of the child. So, my friends and family, please do me a favor when you see another special needs child remember to look past the disabilities and see the beauty of the child. Don't be the next person to hurt a child like my little girl or a special needs mom like me.
〰TB
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Late One Night

8/16/2015

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Do you ever have those late nights that you're tired physically, but mentally you can't get your mind to shut down? It's not that you're thinking about any one thing specifically, you just have random thoughts going through your head and you find yourself sitting in the dark, just watching your child sleep? She's laying there calm... Peaceful... Breathing, sleeping, dreaming, and curled up like a twisted pretzel hugging her stuffed animals/whatever toy she fell asleep with. For me she's also hooked up to her feeding pump. The only sounds in the house are her breathing, the pump, and the AC. These are moments are far and few between for me, but when I get the chance I take the opportunity to enjoy them. I love to watch my precious girl sleep.

It's times like this that thoughts like what my sister-in-law said to me not long ago pop into my head. She came to me at a cookout we were having and told me that she wanted me to know that she and her boyfriend talk about me. They talk about how they don't know how I do it, they don't know how I do everything that I do for my daughter. She tells me I'm such a good mom. She's told me this before and it brings tears to my eyes every time. I don't hear these things often and I don't expect to, so it always brings out that emotional side. I take care of my daughters "typical" and medical needs. I make sure she has what she needs and I love her unconditionally. She is the center of my world and my hero. I can't imagine living my life any other way. We sacrifice everything to make sure our children have what they need medically, physically, and emotionally. We put everything in our lives on hold to care for them... We often lose friends, quit jobs, become home bodies, sometimes stop going to family functions, and so much more. That's what life of a special needs mom is all about. We do it for our babies.

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