"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

Thursday, March 11, 2010

To Clarify

I know my last post made it sound like Marissa's upcoming surgery is a horrible thing. I don't want to mislead you. I think (hope and pray) the end result will be what we have been waiting for for years: getting her trach out for good. The last post (and I'm sure a few more in the future) came from a place of being scared to death of a lot of things this surgery will cause.

First, I am never ok with my baby having surgery. She has had five surgeries so far and it never gets any easier. It is just not cool to have to hand your baby over to someone with a knife and trust that they will do what is necessary to keep her alive, and that they will make her better.

I have never been ok with anesthesia. She does not have any known high risks for problems with anesthesia but I hate it when she has to go under. Anybody ever had minor, outpatient surgery and had to go to a pre-op consultation, only to be told that the riskiest part of the procedure is the anesthesia? That stuff is nothing to take lightly! Marissa has to go under every time she has a bronchoscopy. I have to sign the surgery consent forms. A bronch is considered surgery, even though there is no cutting involved, simply because of the anesthesia.

I am never ok with my baby being in pain while recovering from surgery. She has proven to be a tough cookie through past surgeries but it still breaks this mama's heart to see her in pain. I hate that we have to cause her pain to give her a chance to be trach-free.

I have mentioned previously (and it won't be the last time you hear it!) that two side effects of this kind of surgery are increased risk of aspiration and diminished voice quality. I am not ok with that.

Having this surgery scheduled makes it more real, and that brings on the feeling of fear. Fear that we are making the wrong decision, fear that it won't work and she won't be able to lose the trach, fear that the unthinkable worst will happen.

Having said all that, I really do believe that this is the right thing for us to do and it will result in Marissa losing the trach and being able to move on with her life. I am excited that we are taking this next step! I just need to keep focused on the positive, which anyone who knows me knows is pretty hard for me to do at times. I am not as positive a person as some of you might think.

One last point of clarification, and probably the most important. I do not want to come off as complaining or ungrateful. I have some friends whose kids will have their trachs for life. I am grateful there is a surgery that will give Marissa a chance to get her trach out. I also know she could not be here at all and I am forever grateful for the trach that saved her life and allowed her to come home with us.

Please pray with me that I can let go of my fears, give my burdens of worry and fear up to God and let Him have them for good. Thanks, friends.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10


The VW's said...

I totally understand and I'm praying for you sweet friend! Hugs!!!

Anonymous said...

You are right Alicia, ANY surgery or procedure on your child is hard because in that point in time you have absolutely no control or say in what happens, yet HE does and I know that when it comes down to it, you will rest in that and He will hold you tight through the surgery and recovery.

This is one of those things that you will have to DAILY or maybe even moment by moment surrender to the Lord and ask Him to take all your fears away. For God has not given us spirit of fear - that is from the enemy. So, when we experience fear we are giving in to the one of the World instead of the One of the Universe.

My prayer is that this time, you will have a supernatural peace that comes only from the Father and that others will see Him in you! Love you and June 11 is marked on the calendar as a PRAY BIG TIME day!!!

ShaunaQ said...

I understand your concerns for anesthesia. I avoid it with Christian AT ALL COSTS but when he has "gone under" he's done fine. It doesn't matter to me, though.

I'm still concerned about aspiration. Even though I see Christian swallow regularly, I still get nervous. So I continue to suction him through his nose until I feel better about things. (This is because he throws up not because of secretions.)

It feels like a learning process all over again. Like when we brought him home and learned how to take care of a trache. Now we're learning what life is like without one...again.

I understand your fear.

P.S. I love that scripture quote. That's one of my favorites!

Michelle and Sean said...

I get that! You have every right to have these mixed feelings! You are so strong, I'm sure thats where marissa gets it from.

I have the same fears every time Maggie or Taveon has to go under.

I pray for you everyday and will continue to do so!!

You guys are awesome!! Thanks for sharing your feelings about all of this with us!

ANewKindOfPerfect said...

I understood your feelings! I know you think this is the best thing for Marissa, or you wouldn't be doing it! You are a great mom and wouldn't make a decision like this lightly. I hope and pray it all goes as smoothly as possible with no side affects!

Wendi Taylor said...

I know you don't know me but I want you to know your daughter - and you - are in my prayers.

Brandi said...

Oh Friend, I am so sorry your are on yet another of life's roller coasters. I will be praying for a peace that only God can give for you & Jeremy, as well as wisdom, health & healing for all involved. Although this is scary, how amazing is it that this reconstruction is a possibility! It is wonderful she is a candidate. Again, I am praying and miss you guys. Hopefully the viral soup of winter will leave this house and we will be healthy to see you guys. Thanks for your 'realness'!

Michelle said...

Ditto, ditto, ditto, that is all I'm sayin'. Love and Prayers your way!! and just for old times sake...my verification word is ovessid...????what the heck...

Hope said...

I don't think you are ungratefull or complaining. I'd be terrified too. I'm always praying for Rissa and thinking about you guys. i know this surgery will be a success. I'm remaining faithful.

You are a great friend and a great Mother. Never doubt that.

Jessica mommy to Alex/ RTS said...

I hate the fear! Sometimes it feels like if I let go of the fear, then Im not in control? Makes no sense when I type it out and see those words.
Thinking of you friend. This is big.

Kendra said...

Dang it, Alicia! Why do you always make me cry????? Now that I've said that, I can get on with saying no one would accuse you of complaining--just being real. You have a tough row to hoe, girl, and I'll be praying God holds and comforts you through your fears as you love your daughter through all this.

Lacey said...

You are not complaining at all! Of course your scared to death. I hate putting Jax under for every little thing! They won't sedate him either without anesthesia. I know its a scary surgery, I heard a little about it myself. You won't be ok until its over and done with and you see that she's ok!

Colleen said...

I hate it when Isaac has to go under for a bronch. It's so scary. I don't blame you at all for being fearful of this event. This is a major life changing surgery and the unknown is probably the most scary part. You know we will all be lifting Rissa Roo up in prayer when the time comes!

Myssie said...

I will be praying for you and Rissa! The fear is so scary! Thinking of you both!

The round-the-worlders said...

Here is another prayer that we use on the ship in worship services.

So we pray:

Oh, G-d, who gives some of us work up to the limit of our powers and to others the task of retaining courage and patience through seasons of pain and weariness: we pray for strength and encouragement. Give us the light of Your presence, the power of Your life in us, and the joy of Your never failing love; Through Jesus Christ Our Lord

This we pray for you.

We love you and always have you in our thoughts and prayers and hearts.

Love Dad and Arnie

Lisa said...

Hello, my name is Lisa Naylon and I have a two year old with bilateral vocal chord paralysis. I'm always researching on the internet for treatment options and other families who have experienced the same thing. I came across your blog and was very excited to see how well your little girl is doing. I see she is scheduled to have surgery soon and I was wondering if you could share a little more information about this with me. We live in Kansas City, but are going to Cincinnati Children's in May to see what they can do for my son. His vocal chords are paralyzed in the midline position. He's trached and at risk for aspiration now so no liquids...purees only. Always interested in visiting with someone who has a similar situation. mnaylon@kc.rr.com