"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

Monday, June 28, 2010


Yup. I am. Can't help it.

I have always been a worrier. I used to worry about things like money, staying safe while driving, plans for the future. Now, my worries almost always center around my precious girl. I have been worried about her almost since I learned of her existence. A new level of stress and anxiety was born right along with her on that March night three years ago.

My newest worry is related to the airway surgery she had 2 1/2 weeks ago and our plans for decannulation. This time last week, I was very hopeful. We had just started capping her at night and she was doing really well. We had not heard the loud squeak we used to hear when she inhaled while crying or laughing. The bronch she had showed that the graft was taking very well. The doc said all these things are necessary to consider decannulation. Check, check, and check. Right?

Maybe not.

She is still tolerating her cap 24 hours a day really well. And, I'm sure the graft site is still doing great. But, starting last Thursday, I started noticing that all too familiar squeak when she inhaled while crying or laughing. Damn. I was hoping I was imagining things. Nope. It is there, and while it is not as strong or loud as it was in the past, it has reappeared. One of the criteria the doc has for decan has all of a sudden not been met.

In the past, we thought the squeak was due to the fact that her vocal chords did not open properly and she was having to breathe through a slit while capped. He sats always stayed up while this sound was present, so we never really worried about it, knowing that she would have surgery to correct the problem.

Now, while it may be out of desperation, I have a new theory. I believe that the sound we are hearing while she is capped is her trying to breathe around the trach. Think of it this way: when Marissa does not have a cap on her trach, she is breathing through a straw in her throat. When she is capped, that straw becomes a stick that she can't breathe through. Not only can she not breathe though it, but she has to breathe around it, hence the squeak. Jeremy and I tested this theory yesterday morning after Marissa's bath. While we were changing her ties, we kept the trach capped, pulled it out just far enough for the tip to be sitting just inside the stoma, and Jeremy made her laugh. So, with the stoma plugged, but without the trach sitting in the trachea, we tested and did not hear squeak!

I am not 100% confident in this test simply because we did it for such a short period of time (a few seconds), but it does encourage me to run the info by her doc and see what she says. We have an appointment with her on Thursday. I am pretty sure she will use the flexible scope to look down at Marissa's vocal chords. I pray that they have more movement now than they used to and we can let her know what we think about the squeak. I pray we can still move ahead with plans for decannulation. Mostly, I pray that I can give up all this worrying and allow myself to let God to be in control. I know He is anyway. I know He has this all planned out, so why should I worry? But when my brain won't shut off, it is a hard concept to grasp. I truly am my own worst enemy.

Please, don't get me wrong. I do not want to do anything to Marissa that might jeopardize her health or life. I just have a strong feeling that my theory is correct and the trach is actually causing the squeak. The only way to tell for sure is to pull the trach, under the very close supervision of the doc and the hospital and let Marissa show us what's up.

Please pray with me that we can move ahead with plans for decan and that Marissa can safely breathe without the trach she has now had for more than three years. She deserves to know what life is like when she can just be a kid and go out in the cold Winter air, take a bath, swim, play in the sand and dirt, and run through the sprinklers without us having to hold her hand and protect her neck at all times.

I'll let you all know how things go on Thursday. Thanks in advance for your prayers and support. Not sure I could do any of this without you.


Michelle said...

Oh, Alicia, I'm so there with you. It's one step forward ten steps back. I have been a mess ever since we went in for her ENT follow up. I just can't seem to not be so tearful. It stinks, it really really does...and unfortunately, I believe our dear daughters will keep us forever on this path. *sighs*..I wish I had some comforting words or cheerful advice....but I'm in the same boat floating along just bailing out the water. I love you from a far, soul sister...one feeble attempt to make you smile...I am and forever will be NUTJIM.

Holly said...

Friend of Kendra's here, who's been following your blog. Just wanted to let you know that our family has been praying for Marissa's healing. Sometimes it helps to know that it's not just your friends and family that care about you and your precious child and lift you up in prayer.

ANewKindOfPerfect said...

I hope that you are worried for nothing! Perhaps it is a sign that she is ready to go trach-less. :) I hope the ENT has good news!

Lacey said...

I totally agree with you. I dont even understand how a child can breath with the trach capped. It has to ne hard to breath around that tube.i can totally see how it would sqeak! I think they ahould still pull the trach and see how she does. You will be in a hospital were they can quickly put the trach back in if they need to. Praying your appointment goes well!

Colleen said...

I will be praying for you and Marissa!
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. (Jer 29:11)

The round-the-worlders said...

You and Rissa are always in our prayers. But, a special one for Thursday. We, also, hope your worrying is for nothing, but we know that even if all is well, you will keep worrying......you are a mother, after all.

So, worry if you need to, but don't let it get you down. Everything will be as it should.

We love you all. Bubby and Zeyda

Tamara said...

Praying friend, keep trusting in Him, lean on Him. Have thursday marked on my calendar.. will be praying!

Candace said...

WORRY...a five letter word for MOM! Sending our prayers here in SC

Sherry C said...

I'll be thinking of you thursday. I hope all goes well!

Hope said...

I'm thinking about you guys. And praying!

The VW's said...

I hate the worry monster! I can be quite the worrier as well, and when you have a child it brings about SO MANY things to worry about! We just want the best for our children, so it's so hard not to worry, even when we know that God has it all figured out already.

Praying that the squeak is coming from needing the trach removed and that she will be able to get that darn thing out very soon! Hang in there friend! I'll be thinking of you! Love, Hugs and Prayers!!!

John and Jenna Gensic said...

I hope that the squeak is because of the trach being capped. Mikan had a similar scenario. He didn't squeak, but he had mild retractions that his ENT and pulmonologist didn't like. This scored us several extra rounds of tests. But when we downsized, we noticed a little difference, and now that his trach is out, they both seem to think that it was the culprit. Breathing around that stupid tube is extra work when it's capped! I hope Rissa can move forward and get rid of it.