Worried

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.