"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

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.

Friday, June 25, 2010

Hot Fun in the Summertime!

Every kid should have the opportunity to run through the sprinklers in the Summer! Now Marissa can too, with a little help and supervision, of course.

video



Pure joy!



We just LOVE Summertime!

Sunday, June 20, 2010

The King of Her World

Happy Father's Day, Jeremy!!


Marissa is so blessed to have you for a Daddy. God sure knew what He was doing when He chose you for her. I could not have asked for a better partner in raising this little one. Thank you for being such a caring Daddy. We love you so very much!

Friday, June 18, 2010

Good News and Bad News

First the good news...


Marissa's bronch was the shortest ever!! It took about 20 minutes, just long enough for me to enjoy a six inch sub sandwich and a bag of chips. The doc said it was so short because everything looks great! Her airway looks good, just a little swelling left over from the surgery. The graft looks excellent and is settling in nicely. Dr. P wants to see her in her clinic in two weeks. We are to work back up to capping during the day, then add the cap at night. Once she has done that successfully, it will be time to start talking decan. So, all in all, we heard everything we wanted to hear. YAY! Thank you all for your prayers.

Now the bad news...

That little stinker, Dr. P, is planning to move her practice to Denver in the Fall! She would be the fourth doctor from Marissa's team that has moved. And she is Marissa's main doc, next to her pediatrician! The good news in this situation is that she is planning on conducting a clinic down here twice a month. And if that doesn't work for us, I asked her if we could follow her and she said absolutely! So worst case scenario, we'll have to drive to Denver each time we need to see her. There is no way I will let her get away. She is too good of a doc and Marissa loves her. She is the only doc that Marissa does not get hysterical with every time we see her.

Thanks again and have a great weekend!

Wednesday, June 16, 2010

What an Amazing Kid!


Marissa has not had any pain meds, including regular strength Tylenol, since Sunday afternoon. That would be only 48 hours after surgery! Incredible!


We have put the cap on her trach a few times for a little while and she tolerates it well. We only leave it on for a little while because we want to give her throat and vocal chords a rest. We have noticed a significant change in her voice. :-( It is much softer and breathier, just like the doc said it likely would be. She also can get raspy pretty quickly. I know it is quite soon to make the determination that this is her new voice, but I have a strong feeling that it is. I know there are things that can be done in the future to help her strengthen her voice, but I still have a hard time knowing her voice will never be the same.

Here is a video demonstrating what she sounds like now. There are times that her voice does get breathier and weaker.

video

Jeremy and I gave her a bath for the first time last night and uncovered her incision. It looks really good! It is about 1.5 inches long and it is under her right breast. The good news is that, once she develops into a young woman, the scar should be completely concealed.

We will be returning to the hospital on Friday for Marissa to undergo a bronchoscopy. The doc will look for signs that the graft is taking well and is not developing an infection. She will also check the function of her vocal chords, and will measure her airway. She should be able to give us a ballpark time for decannulation. From what she has told me before, we will begin capping trials, with the ultimate goal being that she is capped 24/7 and keeping her O2 sats up. Once we do that, we might do one more bronch and then decan. It is likely this will happen by admitting her to the hospital for overnight observation. Hopefully we can say "Bye-bye trach, hello naked neck!" sometime very soon.

I'll update again after the bronch. Thanks for all the prayers and support, you guys are the best!

Saturday, June 12, 2010

She's Home!!

We got home at about 9:30 this morning!

She and Jeremy had a pretty restless night. She would wake up about every 30 minutes and want to hold Daddy's hand. He didn't think she was in too much pain during those times, just uncomfortable and sad, wanting to be home. She decided to start sleeping well at about 5:00 and when Mom and I got there at 7:30, she was still sleeping.

At 8:00 the nurse came in and said Dr. P called with discharge orders. Yay! Marissa got quite agitated as we were packing up and moving her around trying get her ready to leave. As soon as she got into her stroller, the smiles started appearing on her little face and she got really happy! She was even dancing to the music on the radio on the car ride home!

So, now we are home and she is watching her favorite video, "The Adventures of Elmo in Grouchland", aka "Elmo's Blanket". I still can't believe we are home 24 hours after she went into surgery! Her recovery will still be pretty painful and long, but we are hopeful. We are just going to stay on top of her pain and let her rest up. Hopefully she will start to feel better and better as the time goes on.

Thank you all for your messages of love, prayers, and support. It really means so much to us to have so many of you pulling for us and lifting our little girl up through all of this.

I leave you with a couple of pictures and a video to demonstrate just how happy our girl is to be home...



video

Friday, June 11, 2010

Surgery

Rissa is in the PICU for at least overnight. She did really well through the surgery. It was a long one; five hours but a lot of that was the doctor trying to get the graft to get into the right spot. It was just being stubborn! True to Rissa form, she made Dr. P earn her paycheck today!


She is now resting comfortably and Dr. P is hopeful she will be out of here tomorrow. Let's pray for that!

Thanks for all the prayers and good vibes. Keep 'em coming!

Sunday, June 6, 2010

My Name Is...

OK, so this was just too cute not to post.


I L-O-V-E her little voice! Even when she is impersonating a baby velociraptor! ;-)

This girl totally makes me smile.

Friday, June 4, 2010

Rissa's Poem

*ETA* Surgery time below

I wanted to share a poem that Marissa's Grandma Utah (Jeremy's mom) wrote for her recently. It is so cute and pulled from real life situations. It represents Rissa and my struggles with her temper tantrums perfectly.

A little back story first. The other night, Marissa had asked for a pretzel. I gave one to her and, in typical Rissa form, she threw a tantrum instead of taking it from me. So, on a whim, I decided to recall Daniel Day-Lewis' performance in "There Will Be Blood" and said "I eat your pretzel. I EAT IT UP!!" I then proceeded to eat her pretzel. She immediately let out this blood curdling scream. I felt bad but could not help laughing. Jeremy and I laughed so hard that Marissa eventually joined us in laughter. So Grandma Utah incorporated the incident in her poem.

Enjoy.

When I’m strong and headed for

A tantrum filled with alarm

My mommy frowns and sits me down

And holds me in her arms.

I don’t know what it’s called,

or I forget the word,

of the thing I’m pointing at

which somehow you misheard.

How can I make the sound

With a stick stuck down my throat.

And form a word you understand

No..I didn’t want a boat!

And then one day I just gave up.

My mouth was not pronouncing,

I want to hear that song again

You know…the one where I was bouncing.”

And the toy you gave me yesterday

Was what I really wanted

Then changed my mind because I can,

Fell on the floor, taunted.


The pretzel looked so good to me

I pointed and you retrieved.

Then once again, I threw a fit

You didn’t look so pleased.

So in your mouth you popped my treat

And down your throat is went

My, my, what a face I made

And showed you how to vent.

With indecision, I’m a child

Who has to be creative.

With every word or gesture made

So you get what I am saying.

I need your eyes, your ears your mouth

As extensions of my own.

To learn the way you do those things

So I can stand alone.

Not by myself or in the shadow

Of every normal thing.

Just independent from all of this

To sleep at night and dream.




Thank you, Janice. That is a wonderful poem! We love you!

Something might come up in the next week to change my mind, but this is probably going to be the last post before Marissa's surgery next Friday, June 11. *ETA* She is scheduled for surgery at 9:00 am. I will update from the hospital when I can. Please pray for my girl next Friday. Pray for us, for the doctors and nurses, and for our family. Thank you.