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Sunday, September 27, 2009

Big day tomorrow.

Tomorrow we sit down with doctors to decide. To trach or not to trach.
Can I just say I'm freaking out. I really need some encouranging words from trach moms. I think of new, dumb things every day. Like last night when I couldn't sleep I was thinking that he's had oxygen on his face his whole life. He looks funny without it. With a trach he wouldn't have it anymore. The not hearing his voice is still what is killing me the most. Everything else I can handle. I've taken care of trached kids a million times, but right now I want to see a kid with a trach up close. Its like I've forgotten and I need a reminder that its really not that bad. I need Parker to come over to my house so I can see him and listen to him talk around his trach.
I'm going to go over to Bella's blog and look at all her pictures really closely.
I can't believe how crazy this is making me.
I'll let you know what happens tomorrow.
whew.... I think I can, I think I can.
at

25 comments:

  1. Trina and JophieSeptember 28, 2009 at 12:04 AM

    It's gonna be OK girlie....

    Take a breath..

    Everything you are feeling is all normal. I felt all those things and more and then I felt them all over again. I actually postponed the surgery by 3 days because I was afraid to do it alone. My support system(some close freinds) were out of town. One PICU doc in particular was NOT happy about that decision but, he had to abide ;)

    What can I do or answer or show you that would ease your mind a bit?

    There is a video on Tammys sight of Parker squealing. It's a recent one of a visit to her home from one of the twins(Janet I think?)(5 minutes from mom)

    Let me know if there is anything I can help with...

    Hang in there.
    Hugs,
    Trina and Jophie

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  2. ShariSeptember 28, 2009 at 12:12 AM

    Deep breaths! Anxiety is normal in a situation like this. I can hear your fear, too. Be easy on yourself. I am praying for you and Jaxson. I don't have a kid with a trach, but I took care of many people who did have one.

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  3. StephanieSeptember 28, 2009 at 2:53 AM

    I'm right with you Lacey. I don't have any advice - I know you guys will be able to make what ever decision needs to be made. Just remember, you know him best. Don't be afraid to remind the docs of that. ;)

    We are sending lots of love and prayers your way today! I have a long drive to Milwaukee, and I know you will be on my mind most of the time.

    Big Hugs!

    Steph and Christopher

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  4. MeSeptember 28, 2009 at 4:33 AM

    I'm so sorry you're dealing with this. Do you visit "Class of 2008" blog? Sarah had a trach when she was young, and then had it removed a few years later I think. I'm sure her mom can give you lots of good info and support.

    Hugs to you.

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  5. StephanieSeptember 28, 2009 at 5:49 AM

    Lacey I have no advice or experience here but an sending a prayer to you. You will do the right thing and after I'm sure Jax will be better for it.Love to you.

    and I know it's near impossible but try to breathe.Relax just a little. And remember we're all with you!

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  6. BeckySeptember 28, 2009 at 6:06 AM

    I KNOW you can. And you will. It is always scary in the beginning. There are SO many good things about a trach...I have come to really appreciate Ben's. I'll conitinue to pray for you my friend. I know that everything will work out. xoxo

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  7. UnknownSeptember 28, 2009 at 6:29 AM

    Hang in there. You'll be okay with any decision that is made. I know this, because you will do what is the best for Jax. Although, I can not imagine the anxiety that you are going through during this time. Please know, I continue to hold Jax close to heart. I'm praying for all of you.

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  8. Ali HarperSeptember 28, 2009 at 6:44 AM

    Many, Many prayers...and lots of love coming your way!

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  9. KristinSeptember 28, 2009 at 9:01 AM

    Oh man, I don't have any advice for you. Just sending more prayers.

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  10. EmilySeptember 28, 2009 at 9:14 AM

    I also don't have any advice.. I wish I did... but I am praying for you and your sweet family.

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  11. The VW'sSeptember 28, 2009 at 9:17 AM

    You CAN do this! God will give you the strength! I'm sorry that you are so anxious about this and I'm sorry that you are having to make this huge decision! I pray that everything goes well and that Jax does great, whatever the plan turns out to be! I don't have any advice, but I'll be praying! HUGS!!!

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  12. The Snell FamilySeptember 28, 2009 at 9:38 AM

    We love you sweetie! You know you can do it, whatever needs to be done. Jax will do whatever it takes to stick around and make you laugh. He loves you momma!

    xoxox
    juls

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  13. Alan AndersonSeptember 28, 2009 at 11:40 AM

    I wish I had some advice or comforting words about living with a trach - but I don't. I just know that you will make the best decision for Jaxson - because that is what you do - you are his fighter - you are his advocate and you know what is best.

    We are thinking about you all the time. We saw Ray and the boys at the buddy walk - they looked good in their shirts! Many, many hugs and prayers coming to you from us!

    We are going to be up at Primary's on Tuesday for another test - I'll call you and see if you are there while we are.

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  14. ChristineSeptember 28, 2009 at 12:22 PM

    prayers for Jax.

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  15. Mama Mason-MannSeptember 28, 2009 at 1:38 PM

    Of course you're freaking out! Anyone in there right mind would be! I'm sure it's all normal what you're feeling, but I also know you'll make the decision of what is best for Jax, whatever that may be. Thinking of you always!
    Amy

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  16. Baylee and Blair's pageSeptember 28, 2009 at 1:53 PM

    Praying that you find some sort of peace with this decision! You will be just fine and so will he!

    Big Hugs - Tiff

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  17. AnonymousSeptember 28, 2009 at 1:55 PM

    You can my dear, you can! I know you can!!! We'll get through this all together! I promise! Prayers for you today that you will all find peace with whatever decision you've made! Love you my dear!

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  18. ParkerMamaSeptember 28, 2009 at 3:23 PM

    It all gonna be good.

    We'd love to have you come over and hang out with our very trached Brave Hero.

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  19. AnonymousSeptember 28, 2009 at 4:55 PM

    Hey Sweetie,
    Oh it's ok for you to be freaking out! I am joining you here, Drew will be having his shunt surgery this week and well I am right there with ya.
    I know there are little "caps" forgot what they are called, that you can put over the trach and they can use their voice. I am sure all the other trach moms will have tons of advice and support for you too! :) Please know we are praying for you all daily and you will make the right decision for Jax.
    BIG HUGGLES :D

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  20. StephanieSeptember 28, 2009 at 6:58 PM

    Oh whoa.
    V's never even been close to being trached, but I do know the fear of seeing your munchkin with one more something-or-other stuck in their body.
    Be absolutely sure of what you feel. Go with it, and don't look back.
    You're smart, strong, and you give Jax all the strength in the world.

    You can do it sweetheart. We all know it. You just need to believe in it too :)

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  21. MichelleSeptember 28, 2009 at 9:38 PM

    I'm so sorry you're going through this and having to make this decision. Praying you had some peace today with whatever was decided.

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  22. The SnellsSeptember 28, 2009 at 10:27 PM

    Lacey,
    I am Juli's sister in law and hear about Jax and his amazing courage often. I just wanted to let you know we will be sending good thoughts your way!! It is very frustrating when drs will not listen to you or doubt you as a parent. We have dealt with that as well with my daughters drs but not even close to the level you deal with it. You are such a strong person and I truely admire you and all you have done for Jax and other kiddos! Our daughter has had to stay at primary childrens on a few occasions and has received a few blankets when she has been there. Everytime she gets one I think of you and how even though you deal with so much you go out of your way to help others. Even something as simple as a new blankie can be so comforting to a child and their parent. Thank you for sharing your story and we wish you the best!

    -Jesse Snell

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  23. TamaraSeptember 29, 2009 at 1:21 AM

    What a little fighter you have, my prayers are with you and your family. You may not remember me, but I met you briefly at Preslie's birthday party. I was one of her nurses at Timp Hosp. I really hope that things go well with your decision. I hope you don't mind if I follow your story. Love and prayers to you!

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  24. DeqlanSeptember 29, 2009 at 3:41 AM

    Praying for you to be lead to the right decisions and choices and praying for Our Lord to continue holding Jaxson and your entire family in His amazing care, sending you love and prayers
    Mark Samm Deqlan Logan

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  25. ColleenSeptember 29, 2009 at 12:41 PM

    Hi there, I do read your blog often and I thought I would comment. Our little man has had a trach since he was 3 months old. He's almost 2 1/2 now. So many factors came to play during that time..it was a whirlwind and I can totally relate to the stress of making a life changing decision. The trach has had it's advantages and disadvantages. You can hear your boy make sound eventually if your ENT approves a passy muire valve. We didn't hear our guy for a whole year..can you imagine? And then we got the valve and it was like music to our ears! One advantage is It's nice to not have to worry about intubation/ventilator as in the PICU they just tack the tube onto the trach..pretty nice considering our boy is next to impossible to intubate. The disadvantage is you could have an increased risk of infection with the trach and you may learn cool words like pseudomonas. Giving you extra cyber hugs and I will be praying for you!

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