Trach Conference

A few months back I was invited to be apart of a family panel to speak at a tracheostomy and ventilator conference at Dell Children's. The conference was for nurses, respiratory therapists, doctors, hospital staff, anyone really, who wanted to learn more about how to provide the best care for trach patients. Needless to say I jumped all over this opportunity to share our story. I emailed the coordinator about 20 pictures of my sweet Noah and the rest of our family interacting with him. They made a slide show that played during the lunch break at the conference. Noah had the most pictures... go figure!

I arrived at the conference around 2:15 and this thing had been going on all day long. I walked into the back of the auditorium and I was amazed at how many people were there. 100 at least! I was not nervous at all going into this but seeing all those people gave me butterflies. I kept reminding myself that I really do have all the answers. After all, this is my daily life.

After a short break, I headed up to the front of the room to sit with another mom who had her 18-year-old daughter with her. Her daughter has had a trach and vent since she was in a car accident when she was 5-years-old. Hearing some of the things that this amazing young woman said    and yes, she could speak very, very well    brought tears to my eyes. She told the story of when she woke up in the hospital, only 5-years-old, and looked down to see a tube in her neck. She went on to say that she suffered, and still does to this day, from extreme panic attacks thinking that at any moment her ventilator would quit and she would die. She understands that her vent is really the only thing keeping her alive. I cannot even begin to imagine how scary that must be. But this girl was so positive! The doctors told her mom in the beginning that she wouldn't live past 10 years of age but there she was telling us how she graduated from high school last year. It was truly amazing. There was also another mom that joined us via FaceTime since they had just recently moved to North Carolina. Her daughter had started out in the NICU at Dell and is now 4-years-old.

They asked us questions and we basically just went down the row and gave our point of view. Here are the questions and my answers, not the exact answer but pretty much what I said:

What is the biggest difference between the home and the hospital?

          I had a nurse explain it to me like this: I am the hospital. I manage everything. I am the boss. I control supplies, nurses, insurance, appointments, everything. There is no "higher up." There is no one to fall back on if something goes wrong. If we run out of supplies, I have to figure out how to fix it. If Noah gets sick, I make the decisions. Yes, I have nurses who have to follow protocols, procedures, and parameters but ultimately Noah is my child and I am in charge. At home, I know everything. In the hospital, there are many unknowns.

What is something that you would like a home health nurse to know before coming into your home?

         I am still Noah's mother. Noah is still very much a baby and we are still getting to know each other. Sometimes I really do want to change his diaper. His whole life I have had nurses taking care of him so it is hard for boundaries to become a little fuzzy. And I understand that it is the nurses job to do these things for him but sometimes it's okay to step back and let me be his Mommy for just a little while. I will always know what is best for him. You may have been a nurse for 20 years but I have been Noah's mother for his whole life. [Refer to my older post "Bonding" if you would like to hear more about this.]

In our teaching process for trach parents, what are somethings that could be improved?

          Overall, the actual skills that we were taught are fabulous. I wouldn't change anything about that. I felt really prepared upon discharge and I was confident in my abilities. One thing that I wish we would've been told though was how Noah would look coming back from surgery. That experience is something that no can fully prepare their heart for but I wish I would've been able to prepare my mind. It truly is a heart breaking, gut wrenching moment. Seeing your most precious gift in the world laying there limp with a hole in his neck. Swollen from fluids, stitches on his chest, not being able to do anything but stand there and cry. I wish I would've known how terrible and hard that moment was going to be. 

You are taking care of someone else 24/7. How do you take care of yourself?

           I had to learn that it is okay to be sad, to cry, to grieve. I want to tell everyone I meet about my amazing little boy. I want everyone to know our story. I don't want to sound like I am whining about how hard my life is or make it seem like I got the short end of the stick. I put on a smile and talk about Noah's surgeries, his muscles spasms, his sicknesses, his diagnosis, his pain. I tried so hard for so long to think that we were okay, that I was okay. But sometimes you really just need to fall apart. When you are pregnant you imagine your child's life. Growing up, getting married, having babies. But with a child like Noah those things just aren't realistic dreams for him. It is okay to grieve for those things that you will miss out on. It is okay to be sad. But then you get to make new dreams for your special child. You dream of them talking to you, hearing their first word, and maybe someday watching their first shaky steps.