Day +109 Update

Posted: December 11, 2010 by Kat in Uncategorized

I guess I should be thankful that I haven’t had to type an update like this yet. But right now it’s just hard to “be” anything when my heart hurts so much for my sweet little boy. Last night around 2 his blood pressure and heart rate were extremely high which alarmed the nurse to come in. She began asking Creed if he felt ok, but got no response. He would not respond at all. She pulled the code blue button and once the dr came in he was given medicine that brought him out of whatever was going on. Normally I have more info about the situation, but that’s all we know. The docs aren’t sure exactly what happened. The dr ordered another chest X-ray this morning and it looked worse than the last one on Tuesday. His oxygen requirement has increased, meaning he’s back on the BiPap machine all the time now. This afternoon Creed had a CT scan of his head to check for bleeds or clots and it was normal. (see, a reason to be thankful) He also had a respiratory panel, which is a test to see if he has some sort of infection in his lungs. That test usually takes 2-4 days for a result. He’s been pretty down all day and hasn’t left my lap all day. He’s not in any pain and says he doesn’t feel yucky, but he is thirsty. Every time he wakes up he says he’s thirsty or he wants coke, sprite, gatoraid, or ice. That request is basically on repeat. So as of now he’s sleeping peacefully with his favorite blanket. As for me, today has been probably the scariest day since this all started in august. I have a lot of frustration with how the PICU is set up. I feel like they’re so concerned with numbers and treatment plans that the emotional needs of the patient and family are overlooked. If this were my first go at this I wouldn’t know any better, but unfortunately it’s not. Creed came to me wrapped in the arms of a NICU nurse with a list of do’s and don’t’s. I understand how this all works. We’ve been in the PICU at Scottish Rite numerous times as well. I basically feel like we’re in a fish bowl being watched and told. We’re not involved in his care and they don’t listen to much that I say. I’ve always been asked my input. I’m not sure if they don’t realize this has been our life the last 6 years or just what. But it makes it hard on me to be in this situation under these terms. It’s hard enough not being in the BMT unit, but when you’re not cared for like we’ve always been cared for that makes things even harder.
Enough of my ranting…

I’m just asking for prayers, all shapes and sizes. Ones for Creed, ones for me, ones for Jon, ones for our families, ones for our nurses, ones for our doctors. Specifically for Creed’s lungs. I do not want to get any closer to the other type of ventilator than we already are. We are too too close in my opinion.

So I’ll end with that and hope and pray for a good night.

Love,
Creed’s mom

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Comments
  1. The Austin Clan ~ Philip, Pamela, Julianne, Trevor & Ella says:

    Stephanie ~ I’m so sorry. We are reading and praying and thinking of you all and praying and I don’t know what to say… I love you and we talk about and laugh about Creed stories from Lighthouse and then pray some more… You are so very close to our hearts… Pamela

  2. sheli says:

    My heart aches for u my friend and your posts are so real&heartfelt! I am so sorry for your extremely difficult and horrific day! You amaze me with your ability to withstand more than most and yet still hold onto faith. You inspire me so much, Steph! I love u and will pray for healthier, happier days to follow! I love u so much and Mr. Creed is a Hero to all of us!!!!!

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