On Monday, April 9th Sophie was admitted to Children's Hospital of Dallas for the 2nd time in less than a year for her Crohn's Disease.
Looking back now I try make it less horrific than it was but it is still too fresh in my mind to be forgotten. Sometimes time makes it better, sometimes it does not and in this case I'm pretty sure it will stick with me for quite a while.
How did we get there?
On the 29th of February Sophie had her 3rd colonoscopy in less than 2 years --- you can read about it here. The days before the procedure required a special diet and fasting. During that time we took Sophie off of the steroids she has been on for 2 years and her Imuran (azathioprine). After the scope her diagnosis was officially changed from Ulcerative Colitis to Crohn's Disease and we made the decision to keep her off of steroids and Imuran and move forward with a new treatment plan of Remicade as soon as possible. Unfortunately, Sophie was diagnosed with Strep twice and then Scarlet Fever in just over a months time. Each illness required antibiotics which always helps tremendously but each time caused her to have C-Diff. Each time delaying further our being able to start her Remicade treatment.
So, without the steroids Sophie got very sick very fast. It's hard for me not to use a lot of curse words when I type out this post. So, I think I will start now. Some people believe that people that curse are uneducated and/or can't think of more appropriate words to use. I disagree, I believe sometimes situations such as these call for a lot of cursing 1) to portray how strongly I despise fucking Crohn's 2) to explain how truly fucking horrific this damn disease can be and 3) sometimes it makes me feel better just to fucking cuss! You have been warned!
By the time Sophie was admitted to the hospital she was having 12-15 bloody stools a day. Really, she was just pooping blood but there wasn't that much poop involved at that point. Along with losing massive amounts of blood, she was having sever stomach cramps and pain, was dehydrated and her hemoglobin level was 7.3 (if I remember correctly). It was fucking bad! She felt terrible and as her mommy I was just emotionally overwhelmed watching her suffer.
Jim left town Monday morning and Sophie was admitted that afternoon. Although friends and family offered to go with me to the hospital I thought sure I could handle it alone. I dropped Nate off with my parents and had a friend pick up Em from school and Sophie and I headed to Dallas. Just hours after arriving I felt overwhelmed. Emotionally and physically. The IV team couldn't seem to get the IV into her vien which caused a lot of tears and screaming, the constant trips with Sophie to the bathroom where I was literally holding her up on the toilet all while maneuvering her around with an IV, and heart monitor, plus feeling for the 1st time that I was totally alone with Sweet Sophie and her stupid, evil Crohn's Disease was pretty damn tough.
Luckily, starting on evening 1 friends and family started streaming in which was a nice distraction for both me and for Sophie. I literally would have not eaten or had anything to drink if it had not been for my friends and family bringing in food, diet coke and coffee for me. With it just being me and the Doodle I was pretty much at her bedside the entire time and could not or would not leave her unless someone else was there with her.
Instead of trying to remember each day I am going to import my Facebook statuses from each day as that was my main form of communication with everyone. Which saved my sanity because I could not have given each and every person their own update so here we go . . .
You are an amazing Warrior mom indeed and Sophie is an incredible Warrior little!!! My girls and I think of Sophie and the Houston clan often...and we're praying for a cure for Crohn's (and of course T1 too)! Wishing Sophie (and you all) didn't have to deal with all of that!!!
(((hugging you tight))) Oh, Laura. It's one thing to see it intermittently through FB updates I may or may not see...but, man. It's totally different to see it all lined up like that with pictures.
I'm SO HAPPY you're on the "other side" of that horrific experience. Praying for you, your family, and your sweet Doodle.
oh, laura I am just finally reading this. I hope things never EVER are like that again, I hope (and pray) that Sophie's body responds well to the treatments and she never has another hospital visit like that. Keep us in the know as we all care for you guys dearly.
1) Please research LDN (low dose naltrexone) research by Dr Jill Smith at Univ. of Pennsylvania.
2) The University of Massachusetts found that the SC Diet resulted in 100% improvement over the spectrum of IBD in its variations. See here: http://www.umassmed.edu/uploadedFiles/MBD_Poster59_EDITED_5-15-2011.pdf
Also check out the main discussion thread on SCD at Crohns Forum: http://www.crohnsforum.com/showthread.php?t=32663
Oh Laura! Sophie is one amazing little girl. Obviously because her mom is pretty f'in amazing! So glad she is feeling and doing better. We will keep praying for her and your family. Don't let the fear of the Remicade win. In someways it seems kind of like the 2 edged sword of insulin: your child needs it to live (or be healthy) but it can also be deadly with no warning. You can let the fear win or keep calm and warrior on. (And so glad that you are choosing the latter!)
I'm 31 yrs old and was diagnosed out of the blue with fucking Crohn's disease 4 years ago. I also have a 6 yr old daughter and an 8 yr old son. Even through all my personal hell, my biggest fear is one of my children suffering through this disease. As a mother and also a Crohn's warrior, my heart goes out to you and your daughter. I've had to make some pretty scary decisions with meds as well, one being a chemotherapy pill and also Remicade. Keep your head up, patient understanding of the pain will help her tremendously. It seems to be really hard for most people to understand how debilitating an "invisible", internal pain can be. You're an awesome mommy!
I hate what that beautiful sweet girl has to go through, and that you have to have fight with this on top of D. Sometimes life is just too messed up! There is no better definition of warrior than you. But of course I know you have no choice. That's what makes you all the more fierce. Crohn's nor D can defeat you!
My three year son has not been responding to any of his medications ... Nor is he willing to take any medicine hidden in ice cream frosting yogurt u name it we've tried ... How is your little girl feeling today .. I scAred to death of the side effects .. It's such a big decision but somehow the only one that might help my once sunny energetic little boy .. Please ease my mind I need a positive story to help me in my decision :) he has colitis and was diagnosed in July
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.
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