I wonder if Sophie will really hate me if I started calling her the little stinker. You know, if I went all anonymous so as not to embarrass my kids one day. I was trying to think of names --- Big Sister, Little Stinker and Super Sweet (referring only to his blood sugar not his 3-year old attitude). Ehhh .... I guess I'll just stick with Emma, Sophie and Nate for now.
Can you tell I'm running on E? EMPTY. Need more coffee. STAT!
I've been trying to update on Facebook from my phone but thought I would log in here to give a quick update for those that don't Facebook. Yea - Jim's in the shower so I stole the laptop ---- gotta make it quick.
Here's the poop . . .
We checked into Children's Medical Center of Dallas yesterday about 1:00 PM and they got her started pretty quickly on an IV of Nexium and steroids. It took 2 tries on the IV which isn't terrible but good hell it's hard on the heart watching that happen.
We've met with nurses, techs, iterns, fellows and doctors all asking the same questions in different ways --- it gets a little exhausting but everyone has been so nice. I'm amazingly very pleased with our stay so far which is a far cry from my thoughts on our experience when we were here with Nate.
Sophie has now had 2 days of IV steroids and is feeling a little better. Her sed rate or ESR is currently 70. Normal range is 3-13. This blood test measures the amount of inflammation in the body.
Her Hemoglobin is currently 7.6 and should be 12. A low Hemoglobin is referred to as Anemia and can sometimes require a blood transfusion. We are hoping her numbers come up so that we can avoid a blood transfusion. I'm having issues wrapping my head around someone else's blood being transfused into my sweet Sophie which may sound odd but it is what it is. We don't really have time to donate and give her ours which is what I would prefer to do.
Ok - - - I didn't get a chance to finish before Jim stole the computer back and now it's almost 9:00 PM.
Sophie had her procedure done today about 1:30 --- it took about 1.5 hours. Her doctor gave us the result of the endoscopy and colonoscopy ---
Endoscopy looks good - results came back completely normal. The official results on the sheet I'm looking at: Grossly normal upper GI endoscopy with biopsies pending.
Colonoscopy showed the colon is completely inflamed. The descending colon, transverse colon, ascending colon was swollen with ulcers. The official result: Pancolitis. My understanding is that Pancolitis is Ulcerative Colitis that includes the entire color (large intestine). Biopsies were taken at the terminal ileum, cecum, ascending colon, transverse colon, ascending colon and rectosigmoid colon.
The doctor still thinks she presents more like Crohn's and because Jim's sister has Crohn's he is still leaning more towards Crohn's but we are waiting on the official biopsies. Obviously, we are concerned either way but we are hoping that the dx remains Pancolitis.
We are still in the hospital for a few more days. Sophie will continue to get steroids through IV and be monitored to make sure her hemoglobin returns to a good, normal range.
Thank you all --- everyone of you --- for all of the love, support, prayers, phone calls, texts, personal messages and good vibes. They have meant so much to me and my family. My Facebook wall is literally filled with support which I have found so comforting throughout this trying time. Thank you - Thank you - Thank you ---- from the bottom of my heart ---- Thank you.
PS - it is now 9:00 AM and I came home for a quick shower and am headed back to the hospital momentarily. I will update as I can.
Keeping you all in my thoughts and prayers right now Laura! You're too funny...I think she might just kill you when she gets older if you go anonymous with "Little Stinker" ;) I hope her sed rate comes down and hemoglobin rises and she's able to feel better soon...she's such a strong girl, but I can imagine she must just be feeling so badly :( Hope she's able to avoid the diagnosis of Crohn's and she can go home soon and they can get a treatment plan in place to help her stay well!
Thank you for taking the time to fill us in. I know Sophie just like us is so proud of you. Spreading awareness. You're awesome!
You guys are in my thoughts and prayers constantly (which explains the stalking texts). Love you both and praying for levels to come up on their own, and her to be able to come home soon. Xoxo
Sophie (AKA Super Squirt) is sooooooooo loved. The pictures tell a story of a precious, beautiful little girl who has many admirers. It just sucks the reason she is there.
You rock for giving updates, my dear. We are ALL so worried and praying our little hearts our for her and the updates are so encouraging.
Information is power.
So thankful you are in wonderful hands. We are praying here for Sophie too. May God bless you with His peace as He wraps his arms around you all. Thanks for updating us, I know how tired you must be. She is just too cute, I can't imagine how she must hurt with all that inflammation. : (
Praying. Hugs, Holly
Just a Mom
I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.
The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.
Please consult your doctor if you have any questions or concerns about your health care options.
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