5th week in PICU…

Posted: January 12, 2011 by creedsstory in Uncategorized

I decided to call this post 5th week in the PICU, because that’s exactly how I feel. I feel everyday that we’ve been here. For the most part I do fairly well sitting within these four walls, listening to the beeps and dings. Watching the nurses come in and out, the doctors meeting outside our door four times a day discussing my child and their bigs plans for him. But then there are those days when I remember that life is still going on, even though it’s kind of stopped in here. Today and the past few days I thought about all that Creed missed out on this past year and how the new year hasn’t changed much in that area either. We’ve spent Halloween, thanksgiving, Christmas, New Years Eve and Day and now the big blizzard of 2011. The last one may not seem like a very big deal to a lot of you reading this. But remembering the fun Creed had last year in the snow and looking at where he is now…it really is. Kids love to play in the snow, and if you’re a parent you love watching them. Hearing them laugh and giggle, watch as their cute little face turns red from the cold. Asking them over and over if they’re cold to hear them say “no” over and over. Snowmen, snow angels, snowballs etc. I look over at Creed and try to hear him laugh or see his adorable smile. But all I hear is the loud sputter of the oscillator as it breathes for him and the tube going down his throat. I think to myself how did this happen…AGAIN, and why? My sweet sweet little boy has been through far too much in his 6 short years and there really is nothing I can do to make it better. It’s in the hands of someone far greater than me. That’s where I have to go with this. I as creed’s mom can not make any sense of this really. I can only think about what God has promised me and told me. This is a sick sinful world that we live in every day. I was told this many many years ago, but until a few years ago I didn’t fully understand what that meant or looked like. I know now just how ugly and horrible sin is. It’s not so much lying, stealing, cheating it’s pain and suffering of God’s children, big or small. It’s unexplained illness and no cures. It’s bald headed children who are absolutely precious, but shouldn’t know what chemo even means. It’s what lives in the walls of this hospital. It’s horrible and I absolutely hate it! No child deserves to live this way or spend one day experiencing sin at it’s finest. As much as I can and could continue to rant about that, I have turned and thought about a bigger question. How is God benefitting from this? How is he being glorified? This is what I cling to when all i can see is sin. When my day is dark and grim, and the sound of the machines haunt me. I think about you. I think about all the lives that have been touched in some small way through all that Creed has encountered. I think about the hundreds of cards and gifts that were sent to him during December. I think about the notes sent to me and my family. I think about all the people we have me through all of this and how we have been able to share Jesus with them all. Then I think, wow! Look what you did Creed, look how God has used you just in these past 5 months. It’s mind blowing! There are things about this journey I will never understand. It seems obvious that it would be Creed being sick, but it’s not, it’s Creed being chosen to show the world about a wonderful Savior. One who gave his child for all us. When I think about that, really think about that, I see my story in a different light. God hasn’t asked me to give him Creed, he just asked me to share him…with you.

As hard as that seems some days, I will continue to cling to what I’ve written above, because I know in my heart that’s the truth.

As of right now, Creed is back on a breathing machine and responding fairly well. He was reintubated on Saturday after his CO2 levels were extremely high. He started of on a conventional ventilator but was changed over to an oscillator on Sunday morning. He’s once again been placed on paralytic and sedation medication, meaning I can’t see his eyes and he can’t move. Heart breaking. What I can see is him laying in God’s hands right now healing. He shows no signs of infection, just really sick little lungs. We are thinking he’ll continue to be on the oscillator for several more days and then will transfer back to the conventional vent to then be weaned back to a high flow nasal canula or c-pap.

Things to pray for would be his lungs and that this is the last episode like this he has. The doctors aren’t sure why this keeps happening. Pray for answers! Answers to several questions, but particularly in the lung department. Pray that Creed is comfortable while intubated. There’s no way to know 100% if he is other than watching his heart rate. The nurses do a great job of that, I just don’t want him to ever hurt or be scared. Pray for me, that I can continue to handle being here and have peace about the day to day decisions being made. As always, thank you all for loving us like you have. This journey has exceeded my thoughts and expectations, but having you along as prayer warriors and friends has definitely made a huge difference.

Much love,
Creed’s mom

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Comments
  1. Nicole says:

    Stephanie you are an amazing mom! You and Creed are an inspiration to so many of us. I’m thankful that God placed us at the Lighthouse so our paths could cross.

    Praying BIG for you & Creed!

  2. Kevin says:

    We love you and Creed!!!!! We continue to pray for both of you, the doctors and all of those around you all, and in fact we’ve never stopped praying for you guys. We also miss you guys like crazy! Specific prayers being lifted up for creeders little lungs. All our love Steph!!!!

  3. Gigi says:

    You continue to amaze me. I love you and I thank God continuously for you. As hard as it is on you, I am so thankful that you are blessed to be Creed’s mom but more importantly that Creed is blessed to call you – Mom. The most fascinating part of this journey is how God is using you as well as Creed. I pray that you will continue to stand firm in your faith. Event time I hear the prayer pager go off I know that not only are people praying for Creed but they are praying for strength and wisdom for you. The hardest thing I do every week is drive away to a normal few days and leave you, my baby, to cope on your own. But know that I don’t just pray once a day but stay in a continuous state of prayer asking God to heal our sweet Creeder and to use our family to glorify Him and His kingdom. I love and admire you, my daughter, Mama

  4. Maxine Ashby says:

    Stephanie, Know that God is continuing to be in the midst of everything. He will bring you through all the suffering and anxiousness that you have felt. I wll be praying for LUNG POWER! That the answers will be found and that Creed will heal 100% and continue to be a blessing to all who know him. God Bless you today as you continue to share Creed’s story with others. PEACE.

  5. Ricky and Toni Durham says:

    praying+++

  6. Sandee Wilson says:

    I could never add or take away from all the things you said…………..you are right on Mom! The hardest part for you is being the mother. I praise God for his gift of obedience and understanding he has left in your heart. Our God is awesome, he does feel our every need and pain. As it has been said many times, we may not understand all of it now, but down the way (as you already know) there will be fruits of Blessings for someone or something, a life changing event. I Love You and Creed with only a Love that the Holy One could Place in our hearts. My prayers are constant, just as our God. Hold on to all you have in him! In Christ – Sandra

  7. Kim Achtchi says:

    Hey Steph. Just wanted you to know that sweet Creed has been in my prayers every single day. He is so brave and so are you! Stay strong and let me know if you need ANYTHING!! I’m just around the corner…take care and continue to be brave!! Love you both!!

  8. Linda Dixon says:

    Stephanie, know we are constantly praying for you and Creed. We are praying today, especially for his lung to strengthen. We pray that the doctors will find the answers they need in treating Creed. We love you. Granda and Big

  9. deena grimsley says:

    Stephanie, your beliefs, strength and courage continue to be an inspiration to me as does Creed and his life long battle.No, there is no real understanding of this in this life but one day we will know all of the answers and I have LOTS of questions.

    I know about Creed and you through my friendship with Dwight, but I feel in my heart that I know you and Creed and I have grown to actually love him through the pics, videos, stories of his short life! I pray for him all throughout the day, everyday, and wait anxiously for an update. I called Dwight at work last week but don’t think I will do that again…maybe at home though.

    I know that you realize the hundreds and hundreds of prayers for you both every day and I, too, wish God would act upon answering them in OUR time..But ,of course, that’s not how it works and again we don’t know why.

    One day, when all of this horror is past and you and Creed have setteled into a Normal life, I would love to meet both of you. Until then, my heartfelt and often anguished prayers continue for you both.

    Deena Grimsley

  10. Jennifer Hughes says:

    Crying and praying for you BOTH today. I know that the hospital can seem so much like hell that you know you don’t want that after life here on earth! Hang onto that Glory and to the hundreds of people who love you both so much. God is doing big things up there and remember…we aren’t big enough to fully “get” his plan. You are a strong wonderful woman and Mommy and we are ALL learning life lessons just through your messages. Hugs & Kisses to our Creeder. Love,Jennifer

  11. amanda bentley says:

    Praying for all. Creed is an amazing child as well as his parents. You all have been through so much. Remember, God is in control and each of us has a specific purpose on this earth.
    IN HIS NAME,
    Amanda Bentley (formerly from Oglethorpe, GA)

  12. Marsha says:

    I was sent your blog by Tera Cheek. I want you to know that you are not alone in you journey. My daughter-in-law traveled this same road a little over seven years ago. It was filled with potholes and than wonderful hills, but the most important part of the journey was that Jesus was walking every step of the way with them. Keep up your wonderful faith and He will guide you every step of the way. Love and prayers to you and your family.

  13. Molly Jones says:

    You don’t know me, but I heard about Creed from Amy Hulett, who is actually of a friend of my friend Alma. Just that confusing explanation alone speaks for how powerful your story is. I have three boys who are four, five, and six, and one little girl who is 11 months. Each morning on the way to school, we say special prayers. Creed has been included on that list for five weeks now. This morning, his mommy and daddy were added. I could never speculate what it feels like to watch your child endure what Creed has, but our family will continue to pray for his recovery and for strength and peace for your family.

    Molly Jones

  14. Tera Cheek says:

    Joshua 1:9 ………………..”Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.”

    Stephanie,

    Once again I admire your faith! Your son has strengthened my faith in many many ways. After reading your post each week/day, I find myself digging in my Bible for answers, questions, and encouragement.

    I pray daily that he will continue to wrap his arms around your family and Creed. I especially pray for complete healing for your precious son. Stay strong in the word and let God guide you daily through this walk.

    Love, Tera Cheek

  15. April says:

    Creed is changing my life everday, and you are changing the way I parent my children. Stephanie, God gave you a special angel.. and I am eternally grateful you share him with me and my children. Lauren prays every night for her “best friend” Creed to get better and go fishing….. all the while her “best friend” Creed is already a better fishermen….bringing others to Christ.
    I love you….
    A~

  16. Charles Adams says:

    Our hearts and love reach out to you in prayer for Creed’s lungs and that this is the last episode like this he has. We shall pray that Creed is comfortable while intubated. We continue praying that God’s healing hand shall bring Creed back to the fulness of health. We are praying for you to continue handling being there and have peace about the day to day decisions being made. Love and peace, Charles Adams

  17. Jill Taylor says:

    This is Jill, Nicole Baring’s friend. Well I have to say everytime I read you post I cry harder. My heart breaks for you, I also feel glorified that you know my God. He is the one who can keep you strong in the weakest of time. He is the one that loves you unconditionally. He is the one who gave his son for you and me. He love us so much and does not want to see us in pain.
    Please know that I continue to pray for you all. May Creed’s lungs just rest and be filled with the strenght to live a healthy life. Please Lord heal this sweet baby of yours. Know that he is fighting to live this life on earth that you have given to him. We love you so much and that you for being in control at all times. Amen!

    Sending my love,
    Jill

  18. Christy Pierce says:

    Thank you, Steph for sharing Creed and your story with us. I pray for you both many times a day and it has been amazing to watch your faith throughout this entire process. You and Creed point us straight to Jesus and for that I say thank you.
    Christy

  19. Renae Kellam says:

    What a family full of warriors! Praying for lung power…praying for strength…prayers of thankfullness for such beautiful children of God that you are…

  20. John Rainbolt says:

    My heart aches as I know your situation. But also my heart is filled with awe of the courage, determination of Creed. I wish I could give you and Creed more comfort, but as we all know we travel our own paths of life, stuggle with it’s heartaches, ultimately alone. We continue to pray for Creed and everyone that loves him, or knows “of” him. i wish you strengh. God Bless, the Rainbolt family.

  21. Melba Franklin says:

    Stephanie — you are amazing – it is so difficult to be surrounded by so much STUFF. Please know that everyday that I pray for Creed, I also pray for you as well. My heart hurts so much for you and I hope to visit with you soon and bring you some Chicken Fried Rice – Smiles
    Melba -Shel’s MOM

  22. Jen says:

    Steph, I think about you and Creed every day. I wish there was more that I could do, but I continue to call the prayer beeper and pray for you and still think that’s the one thing you need most of and that is most powerful. You’re amazingly strong and we should all have moms like you and all be as brave as Creed.
    Please let me know if there’s anything I can do to help you or him.
    XOXOXOX
    Jen B

  23. Carol inlow says:

    You keep thinking positive thoughts, have faith that God knows what he is doing about little Creel. I know that at times you get down, but please keep your chin up.
    We are all out here praying for you & Creel. May God Bless both of you with his love & healing. I have faith that God will heal Creel & you’ll have your happy little boy back, but in his time not our. Love to you both, Carol Inlow, Albany, GA.

  24. Tiffany Jones says:

    I am praying for you & Creed & everyone helping to take care of y’all. You’re right, Creed is an Angel who is here on earth to help others seek God & his Almighty power. My niece, Eve Dixon, was one of God’s Angels too. Even though she was only here 15 days, she touched more lives than most people can in five life-times. God has a plan for everything & everyone at every moment in time. You are where you are for a reason, too! God will not give you anything you can’t hande. Stay strong & know that thousands of us are praying for you continually!!!! Love to Creed!

  25. sherry Manross says:

    Hey. I am with you in prayer.

  26. Patti Bazemore says:

    Stephanie,
    You have no idea who I am, but I know your parents. I’ve worked several walks with them at Emmaus, and I actually bought a therapy horse (Molly) from them. Your mom emailed me in February of 2010 and shared Creed’s story with me. I have faithfully prayed for your family since that time. I even put Creed’s picture in my prayer journal so that I see him every day. Like many others, I feel that I am walking through this journey with you…crying, pleading, begging, questioning, hoping. Your story has been an inspiration to many. I want you to know that while I will continue to pray for Creed…I am going to focus my prayers on you for a while. When I read your mom’s post earlier today, I thought about how she must feel. I know that when I drop my kids off at school for a normal and routine day….I feel like I am leaving them to face the world somewhat on their own. I can’t imagine leaving my grown daughter to face what you are facing each day. It makes me weep for your mom and for your family! When reading your post about the excitement of watching kids in the snow I felt guilty for not getting out and enjoying the blizzard more with my own children. Your posts continue to touch my heart and soul each time they are posted. Praying for you seems like such a minimal task that I can do, but from my own experiences, I know that there have been times in my life that people have prayed for me, and the results have been heart wrenching. You know, God has chosen the perfect mother for Creed in you. You are an encouragement to so many. Creed is truly blessed to have you!!! My prayers are with you!

  27. Lynda and Fred Lott says:

    Hold tight to our ANCHOR-Jesus Christ-WHO, amazing as that seems, loves Creed even MORE than you do…….to HIM, Who is able to do abundantly more than we can ever dream or imagine, be all the glory and honor, forever, and ever…AMEN. Holding you fast in our hearts, thoughts, and prayers. Lynda and Fred

  28. Susan McCullough says:

    Stephanie, Your post today is such a witness to so many. Your journey with Creed is truly a test of your faith. For years I have said that when the hurdles come in our lives, God gives us strong legs to get over them. He will continue to give you the strength you need. Just when you think you can’t face another hurdle God will surprise you with just the perk you need. God you!

  29. Casper says:

    Steph and Creeder, Our hearts ache for you and we miss our second family. your strength amazes us, your strength of faith even more. You both are never far from our thoughts and always in our prayers which seems to get longer and longer as time goes on. Know that you are surrounded by love and we send you all of ours. John, Lisa and Caspie

  30. Krystal Belmont says:

    Stephanie,
    I just want you to know how much I admire your strength in all of this. The only way I can imagine getting through something like this is by being in the palm of HIS hands, and you both are! I pray for Creed and you throughout the day and I know that God can heal him completely! I pray for your strength and courage as well as Creed’s comfort. Reading about what’s going on with you guys makes me even more thankful for my child’s health. She asks about Creed often and says prayers for his healing when she says her prayers at night. I’ve taught her even at the age of 5 that if you ask God for something he will give it to you if it’s in His will. I can hear the belief in her voice when she prays for him and I know God does too! I know God hears all of us praying for you guys and in his time we will see Creed’s healing. Stay strong and know that you are all loved!

  31. Jackie Zurinaga says:

    Stephanie: You and Creed are in our hearts and prayers today. You are a wonderful mother–like gold tested in fire. We are lifting you up to our Heavenly Father for peace and strength and for Creed’s comfort and healing.
    Gorka, Jackie, Monica & Nicholas Zurinaga

  32. Kevin Clements says:

    Steph, Know that you and Creed are loved and we miss you all very much.. Lean on God’s strong arms. He’s there for you and is the GREAT PHYSICIAN!!! Kiss Creed for me!!

  33. Jennie says:

    Stephanie,
    I have and will continue to pray for Creed and for you. Even though I do not know either one of you that well, both of you have touched my life more than you’ll ever know. Your faith and perserverence has made me step back and take a look at my walk with God and there is definitely room for improvement! I have a 3 year old son and Creed’s story is a constant reminder for me to not take one moment for granted even when he is driving me crazy with all of his 3 year old boy energy! God is definitely using you and Creed to change lives. I know that I am a better mother and a better Christian due to reading about your and Creed’s faith, strength and perserverance. I pray for little Creed and I pray for a complete healing especially with his lungs. I also pray for you and that you will feel God’s presence every moment and will have the clarity and wisdom to make the decisions necessary for Creed’s care.
    Jennie (SR Administration)

  34. Joan White says:

    My family and I continue to pray for you and your precious Creed, and hope that God continues to give you the strength that you need to travel the road He has mapped out for you botrh.

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