Tired of Walking This Path

For the most part, I have used this blog not only as a way to keep friends and family updated on Marissa but also as a therapy of sorts for me. A way to keep my spirits up in the midst of my family's not so fun circumstances. A way to keep focused on the positives rather than the many negatives in our lives. I tend to post funny and cute things about Marissa, even if it has not been a funny or cute day. I didn't make a conscious decision to blog this way, it just kind of happened. And I like it that way.

But today's post is not going to follow that pattern, so please bear with me.

This morning Marissa woke up around 6:30 and was perfectly content to play by herself in her crib. I lay in my bed across the hall watching and listening to her on the video monitor. I must have dozed off for a moment because somehow, I missed her throwing up. I came into her room around 6:45 and started undoing her from all of her equipment. I found that she had throw up in her hair, and oddly enough, only in her hair. Thank God it was only in her hair and not in her trach, but it also created a bigger problem for me. I'll get to that in a little bit.

For Marissa and other tracheostomy patients, throw up presents a unique problem. For those of you who are not familiar with trachs, I will give you a short tutorial. A person's nose and mouth are not only the way we breathe, but they also act as a filter for germs. Since Marissa breathes through her neck and has no filter, she is more susceptible to germs and, therefore, gets sick easier, faster and more severely.

The trach is also a direct path to her lungs. The littlest bit of fluid dropped into her trach has the potential to go straight to her lungs almost immediately. For this reason, throw up is a very scary thing for her and us. If she is lying on her back or is reclined and throws up, it most usually goes right into her trach. We have to be very vigilant and if we notice she has gotten vomit into her trach, we have to immediately deep suction her trach to clean her out. Then, for about the next 24 to 48 hours, we live in fear of pneumonia developing. Not fun. She has had two aspiration pneumonias in the last year and one of them, I'm pretty sure, was from aspirating vomit that got into her trach.

This morning, however, aspiration was not a concern to me since she had her trach mask on and I knew she did not get throw up in her trach. But another problem a throwing up trach kid presents is that of clean up. Her trach tube is held in place by soft fabric ties that go around her neck. If these get wet or dirty, we have to change them or else her skin could start breaking down underneath them. I know of other trach parents who are very versed in changing their kid's trach ties by themselves. Not me. I just can't do it by myself. It also takes two of us to bathe Marissa. One of us to prevent water from going into her trach while the other washes and rinses her off.

Usually, if she throws up on herself, I can just sponge bathe her by myself. However, because she had throw up only in her hair, and her hair was covered in the stuff, I had to come up with a way to wash her hair by myself. I had to keep her trach ties dry while soaking, washing and rinsing her head and, oh yeah, not getting water in her trach. I had to call Jeremy at work because my morning brain could not think clearly enough as to how I was going to accomplish this. He helped me come up with a way to do it and I got to work.

The look on her face says it all for both of us!

The trach mask and Heat and Moisture Exchanger,

or artificial nose, that I used to protect her trach

It ended up fine. I was able to keep her ties dry, able to keep water out of her trach, able to soak and wash her hair, and able to get almost all the soap out of her hair.

But my point is this. I am tired of not being able to do anything in a typical manner. A typical mom with a typical kid would have stripped her down, plunked her in a bathtub, and been done with the whole deal in five to ten minutes. Not me. I have to plot my actions very carefully, as though I am going into battle. I have to have all equipment and supplies she might need within arms reach. I have to make sure all my bases are covered or my child could get very sick. Or even worse, she could die.

I am so tired of this. I am tired of having to worry about her throwing up and it going directly into her lungs, or getting all over her and me not being capable of cleaning her up by myself. I am tired of not being able to just put my kid in a bathtub when I need to. I am tired of not being able to just put her in her crib and leave the room because she will tangle herself up in her tubes and wires and disconnect her feeding tube, etc. I am tired of not being able to pack a simple diaper bag and head out the door with my toddler to run a quick errand. Instead, I have to pack life saving equipment and supplies just to run a quick errand. I am tired of having to think and re- think and re-re-think just to do something a typical parent would do easily and naturally. I am tired of walking this path. I am tired.

And yet, as I type this, I can think off the top of my head of five different things Marissa did to crack me up today, and its only 12:30. I know I am blessed.

Thanks for listening (or reading, I should say).

All's well that ends well, I guess.