Monday, June 1, 2009

Monday, June 1

Hello to all! Wow - June is here! I thought about the words of one of our boy's favorite hymns today: "Time is fleeting, flowers are falling, Life will soon be past; pause and ponder where thou goest: Time is flying fast." Cody and I are at the Ronald McDonald House tonight and Grandma is at the hospital with Clay. We will go to the hospital early in the morning and Cody will come back here with Grandma. Carson is in Olney with Chance because he had some activities this week. Clay had another active day and he is ready to leave the hospital. When I arrived early this morning, he continually asked "Where's my breakfast tray?" "Why is it taking so long?" "Did they forget?" "Mom, where is it?" We were both so excited when it arrived. He loves to lift the lid off his plate to see what he's having for each meal.
Clay will be sent home with his trach tube. We had many mixed emotions about this; but, we are just happy that we get to take him home. We will adjust to life with a trach tube and understand that it is not permanent. Chance and I will be taking a pediatric CPR class. Someone who knows (and works with) pediatric trach tubes will be sent to Clay's room to show us how to change it, clean it, and put it back in (if it comes out). I keep telling myself to not worry, worry, worry. We were told that Clay will have surgeries every month or two. His scars will have to have releases. In order to perform these surgeries, Clay will have to be under anesthesia. The scars have caused his neck to pull down and his mouth doesn't open wide; therefore, it would be extremely difficult to intubate him for surgeries. Having the trach tube leaves an open airway that the anesthesiologist can work with during his surgeries. I'm going to go to bed now that I have probably confused all of you. I'm so tired, I can't think much more. Thanks to all and good night.


  1. Keep up the Great work MOM & DAD. You have been through some very uncomfortable days, but
    remember the doctors would not send Clay home
    with the trach if they did not believe you
    would be there. Dad once told me as a child he
    would not ask me to do something if he didn't know I could do it and I still think of that
    today and believe you are still the Best examples we could have as parents.
    Love and extra hugs,

  2. I am still sitting here amazed at how clearly you just explained all of that! You are doing a great job! I can imagine it is scary to go home with the trach in, but like the Elseners said, it is true they wouldn't send him home with it if they didn't think it would be okay. Being home will be good for all of you physically and emotionally. At least then you can all be together. I am quite the worrier and Matthew 6:27 always seems to help me. Who of you by worrying can add a single hour to his life? Don't worry, DeeDee I am gonna be praying! I promise! Love to you all! Missy

  3. Actually try to think of the trach as a good thing. If they can't get his mouth open and can't really position his head to visual the placement of the tube, I would probably want to keep the trach for at least a little while until he stretches out a little more. With my neck and mouth the way that it is, they have a really hard time getting the tube in my mouth. They actually trached me once because they couldn't get the tube in and another time, they decided they wouldn't even put me under at all until they had the tube placed. I had the unfortunate experience of being fully conscious before while they were trying to intubate me and were not being successful so I know exactly what happens. It's pretty traumatic and it makes your jaw really sore when they try to pry it open. Yet another time, they just told me if they couldn't get it in, they were just going to trach me again. So basically even if they take it out, they might have to end up putting it back in to put him under anesthetic if they can't get his mouth open. It also stresses the doctors a little when they can't get your airway established. I think that you both will be awesome trach cleaners, just look at how clean the rest of your kids are and just think of the trach as another part of Clay. You will do absolutely great. He will be fine and all stretched out someday and totally trach free. In the meantime, just try to think of the trach as a good established airway and one less thing that they have to do to him each time they sedate him. God Bless

  4. "Those who hope in the Lord will renew their strength. They will soar on wings like eagles. they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31

    DeeDee: You will be a pro in no time! It's unfathomable what we can and will do for our kids when it is needed.

    I have had several young students with trachs as a public school SLP out here in the rural area. Although I have had training, it's the kids who are the most matter-of-fact with me and so nonchalant. You will do great.

    Praying with the other prayer warriors!


  5. It is so encouraging to read about Clay being anxious to get his tray so he can eat, and the adventure of lifting the lid to see what it there! Love the picture we get from your words of an energetic little boy just waiting to get out and play and run.
    We understand the worry of parents. It will become second nature before long. Like Jeanne' mentioned...we do for our kids things we never thought we would/could. Our thoughts will continue to be with you as you stretch yourselves again for the life of a wonderful little guy!

  6. DeeDee & Chance - after everything you have been through these pays 100+ days, we have no doubt you can do the necessary for your little guy when you take him home. It's a little like being at convention with the Great Physician and then being sent home to continue the treatment and healing. The Great Physician is never far away - and you and Chance will have lots of support. It is just so touching to know this day is here. May God give you strength and may God bless you. Dawn & Pam

  7. Hello Fite Family--I don't believe we've ever met, but I heard about Clay from a friend here in Portland and I have been keeping track of his progress since February 14th. I frequently think of him and you, his family, as you go through all the ups and downs of his recovery. Although you may have some "downs," I'm sure there will be more "ups" at this point.

    You are all in my thoughts and prayers!

    Andrea Johnson, Portland, OR

  8. You'll do just fine with trach care! It's just a devise that you learn the proper cleaning techniques for and then "no problem, mon". I too think it's a comfort to have it in place for future access. What a thrill to be able to take him home soon. In time for a big July 4th celebration/parade!! I surely hope you'll keep updating this blog.

  9. Yay that "home" is the next step, and will be happening soon. I can't imagine how excited Clay is going to be about going home after so long away! I understand the apprehension about leaving the care he has now to becoming the ones to care completely for him, with the trach. A big step that is a little scary...thinking of you all so very much. Love, Morgan and Michelle

  10. After going through all you two have....trach care will be no problem. You both will do just fine. I certainly agree with others and the doctors about keeping that airway! I am so excited about you getting closer to home.
    Love you guys!