"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, December 3, 2008

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.


Hope said...

I can't say I understand because I've never dealt with that. I am sorry that you have to face these issues daily. I do think Marissa is blessed to have you. I also feel that you are an amazing person (and all the other trach moms) for all you do and have done for your child. I may never understand the full impact of what you ladies do, but I am inspired by you all. I do offer support and friendship, a virtual shoulder to cry on.

I hope she's feeling better now. You have done such a great job with her.


dreambuilder87 said...

Someday you're going to have to demonstrate to me, how you EVER washed her hair without getting water in her trach...and even more so....how you kept her trach ties DRY and STILL managed to wash her hair..you...are...amazing!! And what is your NEXT trick?? LOL....I can't imangine, after raising 5 kids, what it must be like to go through YOUR day. Hang in there and like you did, find the little things in your un-normal day that make you smile or outright laugh. Marissa will definately entertain you!

Anonymous said...

Stay strong! I am sure it must be so rough through out each day. You both are so strong and blessed in that you have each other. You keep her well and she keeps you laughing. I pray for more months without doctors visits and even more laughs and overall progress.

Dana said...

Just think Normal Is boring. We get extra challenges and extra special kids.

It is hard. You totally need a bath chair. We got one from Infants and Toodlers. It reclines so I just push my long child all the way up and have a basin of water underneath to wash her hair.

As for trach changing alone....... practice and then sometimes it still doesn't go perfect. Now everytime I do it alone I review the rules. 1) No talking 2) keep your arms down 3) Don't wiggle

Sounds like it was a hard morning but yet again you won!

Michelle said...

Hang in there sister! It's hard to go through your everyday life, but you are better for it. I know it is hard to see that during those times, but you are.

She does keep us laughing though! And that smile can melt any heart!

I love you and hope tomorrow is a better day and no doctors this month!

Love you,
Auntie Chelle

Janice said...

OK, I'm ready to cry now. That look on Marissa's face in the first picture breaks my heart.

And you are allowed to be tired. I wish we could make it all go away for you. But I'm so happy my son is married to you and my granddaughter has you for a mom. I knew a long time ago when Katelin (SP?) was a baby that you would be a good mom. I'm sorry you got dealt this hand - I'm sorry this baby has to go through what she does but I'm thrilled she's here. And God doesn't give these children to just anyone. You and Jeremy have the most beautiful little girl. She is the smartest child I've met. You can read every one of her feelings and thoughts in the expressions on her face - she communicates using far more advanced methods than a child with a voice. And she learns that from you and Jeremy. What a fantastic job you guys are doing.

I know you're tired but your efforts are paying off big time and I'm so grateful for you.

Here's a BIG HUG!


Myssie said...

Sorry you had a rough day. I hope that tomorrow is better. ((HUGS))

Faith said...

Hope things are getting better....(and I really wish she had a Nissen!!!!) AND I really wish that you and Jeremy had a vacation in the works....(time to start planning?)

Big Hugs,

Jessica mommy to Alex/ RTS said...

I am so sorry that I am just now reading this. Noah and Joel have had strep so I am way behind on my bloggy family......
I hope things have gotten better for you. Deep breath.
These moments where typical, normal, easy arent anywhere in sight are the hardest. Somthing like a bath, somthing that should be so simple.......You are doing great, keep it up.
Love you.....

Anonymous said...

I just read the story about last Wed. I am so sorry you guys are going thru this but I can't think of better parents for Marissa. Keep strong - keep writing - that is a great release for you. She looked so happy in the last picture. Love Aunt Teri and Uncle Norm

Finding Normal said...

Found you through Surviving It All. I can understand the tiredness, or a little bit of it. It seems nothing is easy some days. You are a warrior of a Mama, and Marissa is just as lucky to have you as you are to have her!