Update from Steph

Posted: October 26, 2010 by Kat in Uncategorized

This update is a little over due. I apologize for that. So let’s see, our last stay in the hospital was 12 days. Towards the end Creed had an endoscopy and a colonoscopy to take biopsies. He was having gut issues and they wanted to be sure it wasn’t graph vs host disease (gvhd). There are definitely risks to doing these procedures. The biggest being bleeding, with his low platelet count the risk of not clotting is pretty big. The morning of the scope, he received two platelet transfusion to ramp up his counts. Heading unto surgery his platelets were 88,000. The procedure went well and there were no signs of bleeding. Whew… So he rested the rest of the day with hopes of finally going home on Friday. Friday came and sure enough we were released. He didn’t seem to be a 100%, but honestly most of these kids aren’t this far out from transplant. There’s still so much going on in their bodies and so much recovery left. At 6:00pm we headed home. Mom and I said several times that it just seemed so wrong taking him home not feeling great. On the way home he threw up several times. Once we got home he snuggled up on the sofa to sleep. He started getting a little restless and so I ended up putting him in his bed to sleep, so I thought. Instead he began throwing up again. I decided to give him some anti nausea medicine. Wouldn’t stay down, tried a different type…didn’t work…tried once more…still nothing. After talking to the doctor we packed up and headed back to Egleston. We had a total of 5 hours away before we returned. Into the ER we went. Still throwing up, they decided to place a tube down his nose into his belly to suck the bile/nasty green stuff out and to stop him from vomiting. Creed is no dummy and when he heard the word ng tube he knew exactly what was about to happen. A fight…a big fight! He was given some sleepy medicine, to hopefully relax. No so much!! And so it began, an emt, me and mama. For all of you that have had to hold your child down while something horrible like this happened, you can imagine how I felt. It’s so painful to know in your head that you’re doing the right thing, but your heart is absolutely breaking. Tube in and suction going…400 ml out and no more vomiting. All is well. Now back up to the room we just left…5 hours ago.

Saturday we felt progress was made and out came the tube. Pretty easy day overall. Sunday, it started again!! I’m sure you know where this is headed…back to the tube. Jon was there with Creed while I was resting from my previous week. He called to tell me what was happening, I knew the battle ahead so I told the nurse he needed more sleepy meds than before in hopes that this would help out everybody. Sweet aunt rach cheered him on and loved on him while Jon and the two nurses got the tube in with no injuries. That boy is incredibly strong, I was a little worried for all those involved. Seriously…
So, tube in and suctioning began. By the end of the day we were somewhere close to 2000ml (2 liters!!) that was removed from his tummy. Yikes!! The night went well, only to start another crazy day on Monday.

Creed had an ultrasound around 10:00 to check for a blockage of some sort. And there IT was, no idea what IT was, but we saw it. From there, we were sent back up to the room for a bag of contrast placed into his tube and into his belly. Back downstairs we went for the CT scan. Quick and easy, and on our way. Shortly after Creeds doctor came in to tell us what they saw. Drumroll…..a hematoma in his duodenum or a bruise in his small intestine. Now what right? Well, a week of stomach suctioning via tube, iv nutrition, lots of platelets and NOTHING TO EAT!!!!!! They’re hoping this will allow the hematoma to shrink. If this doesn’t seem to be effective, the next option is surgery. No one is eager about that, considering we are constantly chasing our platelets. They’ll continue doing ultrasounds to measure the hematoma and see if there is any change. This is where I need all of you!! Please, please, please pray for several things…
1. Shrinkage of the hematoma
2. Creed not being able to eat. He is very upset about this and already very hungry.
3. Patience, this will be very taxing on all of us.
4. General healing throughout

I have seen so many of our prayers being answered. I know that God is with us. However, this journey is tiring and we are ready to go home and be home. We’ll be here at least 2 weeks. I looked back at my calendar and creed has slept in his bed 6 times since August 13. As compliant as he is, it’s getting old. He longs for his friends, playing outside, and some fast food. We’re all tired and honestly we are still far from this all being over. This journey is one we’ve longed for, and without your love and support we wouldn’t have made it. It’s time to try and recharge and go back in. I thank God for giving Creed to me. I’m asking him now to give me the strength to be the mom he trusts me to be.
Thanks as always for walking beside us.

Much love,
Steph

Watch the video below to see the bravest little boy during his CT scan.

PRAYER PAGER: (229) 931-1635

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Comments
  1. Ricky and Toni Dugham says:

    We are praying+++

  2. Debra Knight says:

    Ahhh Steph ~ Praising God that this is nothing more than a hematoma!! Poor guy though. I used to work for a surgeon and I once told him that if I had an NG tube he needed to know he would have to give me general anethesia to put it in!!! Creed is one TOUGH COOKIE! You are one STRONG MAMA! A week of no food ~ praying for Creed to accept this and not to feel hungry and especially for th NG tube to stay in place. Praying the hematoma will dissolve and go away quickly on its own. I also pray that years from now Creed’s memory will only allow him to remember the good things in all of this. Casper…..Steve Fee…..all the visitors and gifts…..the cool basketball court set up in his room…..all the special time he had with his Mom and Dad, GiGi and Pop Pop…..and feeling Jesus all around him.
    Chuck has given platelets every 2 weeks for several years now. He had quit giving them for a while because he was trainig for a half ironman…..excuse me….a 70.3 ironman event. He says if you say half ironman it makes it sound less than it was (BARF!!) Anyway….his race was September 26th and he had not gotten back into his every 2 weeks platelet donation routine. He was scheduled to give yesterday but was really busy at work and was going to postpone it for a week. Then we got the post on Creed and the text from GiGi and he knew God was telling him he was not THAT busy and he went to give platelets.
    Hold tight to Jesus!
    Praying……Debra

  3. Kristin Baugh says:

    Praying for peace and healing during this trying time!

  4. Sharon Pounds says:

    Stephanie/Jon/Gigi and Gogo,

    My heart is breaking for all of you and Creed. As the “Nana” of a child with a heart condition I can relate a little…but, what you are going through is much more troubling to think about the unknown and all the things Creed has gone through. He is such a strong little boy with a positive attitude but it is not a surprise that this is getting old. I have asked every prayer warrior I know to put him on their list and I know God will bring all of you through this. He will not let you go through this journey without a good outcome and Creed is such a testimony for everyone whose life he touches.

  5. Jennie says:

    Praying for healing and for God to give both of you the strength to get through all of this. Both of you are an inspiration and I am continually amazed by little Creed’s fighting spirit and strength.
    Jennie – Administration at Scottish Rite

  6. Eugenia Helms says:

    Love you and Creed so much Stephanie and praying for God to give you HIS STRENGTH and for Creed, His HEALING!!!!

  7. Aunt Rach says:

    Creeder I love you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and Mommy and daddy too:)

  8. Dear Lord.. As with all things – Your Will be done – but I ask that you Please give our good friend Creed the strength and patience to deal with what you have laid upon him – help him to see not eating not a punishment but as a way to prevent him getting worse and what is needed to get him well. I can imagine how hard that must be. So please give him comfort in this time.

    Please give his parents and his care takers the wisdom to do what is best, the strength to do what they must, and comfort when their hearts are breaking for having to do it
    Thank You Amen

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