Good things in 4111

Posted: February 1, 2011 by Kat in Uncategorized

It is with a big smile and a huge sigh of relief that I type this update. Prayers were and definitely are still being answered. I’m so amazed at seeing God work in room 4111 daily. Not even a week ago Creed was extubated. As exciting as that day was, it also came with a great amount of fear. This was a place we had already been twice before, and thought we were on the home stretch. Both times within a few days Creed was reintubated and once again the future was unknown. So you can imagine how gun shy we were when the time came to take him off the breathing machine and allow him to show us what he could do. This time he has soared. His lungs are healthier and he is getting stronger and stronger everyday. Right now he sleeps on a bipap machine which gives him a little added pressure during the night. During the day, he is on a high flow nasal canula. The settings on both of these machines are being weaned down, but at “Creed’s speed”. The doctors have learned that Creed is always in control, no matter how hard you push him. If he doesn’t want to do it, he’s not. Talk about a strong willed child. Geesh… So now that we are all on the same page, things have gone amazingly smooth. Creed has tolerated all the weans and continues to make progress everyday. Please understand that through this all he is still very weak and is having to once again go through physical therapy to strengthen his muscles. He’s having to learn to hold his head up, sit up in a chair, things that he could do over and over all day before all of this. He is still not able to eat or drink. The doctors won’t allow this until he can have a swallow study to make sure he won’t aspirate. The swallow study can’t be done until he’s weaned a little more. At first Creed was pretty much on repeat with, “I want water, I want cherry coke or I want gatoraide”, we have spent the last few days trying to explain to him why he couldn’t have those things yet. Today while getting a breathing treatment he looked over at me and said, “mom, is this helping me be able to drink?” I smiled and told him “yep, that’s how your lungs get stronger and stronger.” I feel like he’s made peace with that for now. We’ll see. He can however, have lollipops, and these help tons. Until the swallow study, he is being feed through an NG tube (tube in his nose) and his central line.

Today the doctors were actually talking about what’s next. Where we are going. Do we even need to go back to BMT (bone marrow transplant unit) before heading over to Scottish Rite for inpatient rehab. That still hasn’t been decided. Creed will get therapy about 6 hours a day over there. This will get him back up running around and being silly. I can’t wait!!!!! We should probably know more maybe this weekend or next week. We still have a long way to go, but he has already come so far. I’m estatic with his progress this week. Seeing him sitting up in his wheelchair coloring was the best! He loves to draw and color, I’ve missed seeing him do that. All these little things leads me to say this… THANK YOU THANK YOU THANK YOU, I know that without your prayers we wouldn’t be here right now. God has heard our cries and has chosen to heal Creed. I wish I could share all the feelings I get from the beeps from the prayer pager, how it warms my heart and provides comfort. When I would have moments of doubt or uncertainty that pager would go off reminding me that God is bigger than any fear I may have. He’s bigger than any problem that was in our room and he’s big enough to heal Creed. It is a constant reminder of how great our God is. Thank you for showing me God’s love and for comforting us with your comments and prayers. We’re still on the journey to healthier days, and who knows when we’ll get there. I just know that sitting on the front row has shown me things that I would have never been able to see anywhere else. I hope you all have been able to see glimpses of these things through me. I would love to share them all with you. I’ve tried to the best I could through this blog. Thank you all again!!! Much love, Creed’s mom

  1. Sandee Wilson says:

    Haven’t stop asking our Father for a miracle, and I am excited for you and your family. I do not know you guys personally, but I feel as if i do. You are a part of the same family of God that i belong to! Thank you so much for the updates…………they give us specifics to pray about. Sandee

  2. Melba Franklin says:

    Love reading every word! Praise God! I will continue to PRAY!!!!! My alarm still goes off at 12noon everyday for Creed and I pray! Will continue. So delighted to see Creed sitting up and beginning to do what he loves — color! Hope to visit with you soon.

  3. Linda DIxon says:

    That picture of Creeder coloring is PRICELESS!!! How far that precious boy has come, we know the road is very long yet, but we also know God is in control!!!! We love you!!! Big and Granda

  4. Jennifer Hughes says:

    What a GREAT BIG GOD that has Creed wrapped in his blanket of love and health today!! So, thrilled to see this post and to know that Mommy is getting some happy moments to celebrate. Still praying & will not stop until he is home and back to being the Creed we know and love. xxxoooxxx Jennifer

  5. Fred and Barbara Usry says:

    I don’t know you, however when my husband went on the Walk to Emmas Creed was brought up for prayer and we have been praying for him since.
    When I was 10 my youngest sister had cancer. This was 1960. There was very little that could be done for her. She was seven and so little was known about bone cancer. The doctors told mom and dad it was just a matter of time. There was a zero cure rate. Well, I was young but I crawled under my bed and I prayed for her, Mary Carol, and today she is the only living person in this country that lived through the type of cancer she had from the early 60’s. I tell you this because as you know there is always hope and God is wonderful. We will be praying for Creed to be out of bed and running around playing laughing and being a happy little boy. What’s more because I remember what my mother and dad went through I will be praying for you for the strenght you need as he heals. God bless you. It is written that our trails give us strenght, just think of how strong you are.

  6. toschia thomas says:

    May God continue to bless Creed and your family..Creed is in my Prayers.

  7. Nicole Baring says:

    Amazing… what an awesome update! Your words are always so beautifully written Stephanie. Lots of prayers for strength and healing.

  8. Ma and Aunt Sarah says:

    Praise God for His continued blessings. It is wonderful to see Creed doing his “home work”. We will keep asking God to make him completely well with strong lungs and legs so he can out run his Mom when he goes home!! Thanks so much for the updates.

  9. Tera Cheek says:

    Priceless picture! He is amazing. What a positive spiritual influence you and your little angel have had on so many lives. What a testimony of God’s Faith! We will continue to pray daily for his complete healing.

  10. John Rainbolt says:

    Prayers answered, great news. How about putting Creed to work, and auctioning off some of his colorings. I certainly would be proud to have one framed, hanging in my house. Proceeds going directly to him or wherever you decide. Just a thought, I know it’s a lot of work to get these things organized. Anyway, God Speed Creed, a Cherry coke is in your near future. Wanted to also mention that today is my grandaughter Allisyn’s birthday, I know she will be thrilled at this news.

  11. Melita McGrath says:

    Omg! I am so proud of this little guy! He is so strong!and you are a awesome Mom! God is with you all all the time and every single minute! And your faith makes him happy! But I will keep thinking of you all and praying that he will be soon able to do all the things that any child at his age should be doing. God bless you!

  12. Christy Pierce says:

    I love the picture and the update!! Thank you, Father! We pray for guys often and will continue to do so!

  13. Susan McCullough says:

    SOUNDS LIKE GOD HAS BEEN VERY VERY BUSY AT WORK IN THAT LITTLE FELLOW’S BODY!!!! “Jesus loves the little children, all the little children of the world, red and yellow black and whit they are precious in his sight, Jesus loves the little children of the world.” My Sunday School class of 4 and 5 year old at Dawson United Methodist pray for Creed every Sunday. We will thank Him for some answered prayers this week. Love to all of you.

  14. Kevin Clements says:

    Counting the minutes till yall are back home with us…even if it is rehab!!!Love, prayers and hugs to you all..Kevin

  15. Alyson Myers says:

    God is amazing and miracles happen every day and Creed is the perfect example of this. Can’t wait for you to get back to Scottish Rite so I can check in on my favorite guy. Prayers being sent your way.

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