Monday, May 20, 2013

Trach Week

This week is Global Tracheostomy Tube Awareness Week. Ella has had her trach since she was 6 months old. She was born with a small, fragile airway, mostly due to Pierre Robin Sequence, and was unable to be intubated for surgery as a baby. She was also found to have both central and obstructive apnea and was put on C-PAP through a ventilator at that time. This photo below shows her trach tube clearly. It's held on by velcro ties that must be changed out daily along with care to her neck and the stoma (i.e., the "hole" in her neck) to prevent breakdown of the skin and infection.

There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.

She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.

Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.

Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!

Friday, May 10, 2013

Pseudo Mom

I can't talk to you about when to switch your baby to solid foods. I can't hold a conversation with you about the latest kid's movie or toy. I don't shuttle around from school to ballet lessons and play dates. We don't get invited to birthday parties or build sandcastles on the beach on vacation. In fact, you will rarely see me out in public with my daughter at all. But I am a mom.

I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.

When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.

But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.