Celiac Disease

Well alot has changed since I last blogged an update! She was discharged from the Children's Hospital July 16, 2010, which was a Friday and by that next Monday she was FULL of stool and obstructions AGAIN after having an NG Tube for 3 days. When we left the hospital the x-rays showed that she was completely empty of blockages and hard stool. She was having pains yet she was going potty. So, Dr. Focht put her on some Fiber chewables along with the rest of her meds. She seemed to still be having alot of pains. August 12, 2010 she became having diarrhea and vomitting. I made an appointment with her pediatrician that Friday which was the 13th. He diagnosed her with having a GI Virus that was called a "Super Bug". It had vomitting, diarrhea and lots of belly pains which was only suppose to last 3-5 days in which it did. She was pain free, no vomitting or diarrhea for 2-3 days then it came back. August 24, 2010 I had to take her to our Emergency Department because the pain was getting more intense, she was unable to keep anything down and she spiked a fever of 105. The ER doctor did a urinalysis and it came back that her white count was really high. He gave her a dose of bactrim and told me she had a UTI to make a follow-up appointment with her pediatrician the very next day. Which I did. Dr. Dedeoglu reviewed the urinalysis results from the ED and ruled out a UTI and did a repeat urinalysis and had me stop the Bactrim right away. That night she had gotten worse so I took her to Mount Nittany Medical Center in State College that is 45 minutes away. Dr. Feese did an xray and yet another urinalysis. The results show another elevated white count and a large amount of stool through the colon and intestine. And sent us home. The very next day (Wednesday) I called Dr. Focht her GI doctor and explained to him what was going on and he immediately ordered bloodwork. I took her over to her pediatricians office for the bloodwork. And he told me that if the vomitting and lack of eating went on to take her to our ED for IV fluids so she did not become dehydrated. Her bloodwork came back normal. So, he then ordered an ultrasound on Thursday which the first opening wasn't available until the following Wednesday September 1, 2010 at 8:30. He wanted to look at her liver and gull bladder. She continued refusing to eat but she was still drinking (small amounts) Saturday evening she became vomitting in her sleep and running a fever. So, I took her to our ED for IV Fluids. We spent 6 hours in the ED because she was severely dehydrated. They ran bloodwork which came back normal. This is 3 sets of bloodwork that came back "normal". Monday evening she was playing Peek-A-Boo with her 7 month old cousin. While she was doing that she put a thick fleece blanket over her head and was spinning in circles, lost her balance and fell into my moms old fashioned radiator heater and split her head wide open. I had to call the ambulance because she was unconcious and was bleeding really bad. Well she ended up with 3 stitches, a concussion and major swelling and bruises of her forehead, eyes and nose. Wednesday morning September 1st we went for her ultrasound. I called later that afternoon and everything looked great, the gull bladder was in normal range and there werent any masses on her liver. Dr. Focht then ordered another xray. So since it was late in the day I had to take her the next morning which was Thursday. I took her early in the morning and then waited a few hours and called Dottie for the results. Well Mrs. Dottie was full of pretty bad news. While she was waiting on Dr. Focht to look at the xrays she was comparing the bloodwork and realized that Bennett was Celiac positive meaning she has Celiac Disease. So, now Dr. Focht thinks that with her having Cystic Fibrosis and Celiac Disease is why she is having so many issues with blockages and obstructions and is still obstructed. He wants to do a repeat endoscopy and 2 other tests. He thinks she also has incontinence. And if she does there is a possibility that it can be fixed with surgery. They are suppose to call me tomorrow with a day and time to have her in Danville to have these tests/procedures done then the following day we are meeting with Dr. Focht to discuss the results and what our next step is going to be. I am a nervous mess worrying about what is going to happen. She is suppose to start pre-school next week! She is really looking forward to it. She really enjoyed preschool last year. I will be heart broken if she doesn't get to start right away but then again I want her to get her treatment/surgery and her intestinal obstructions taken care of as soon possible! If anyone has any good Gluten Free recipes or knows of any kid friendly gluten free foods please give those to me so I can make her diet change as smooth as possible!

Inspiration

Bennett had a doctors appointment this morning, so when we got home from running errands and having her stitches removed, I check the mail. Well there wasn't any mail but there was an envelope with my name on it. I opened it up, it was a card. A beautiful card and it reads:

(outside)
They say
What doesn't kill you
makes you stronger.
Well, what if
you didn't sign up
for extra-strength training?
What if you'd rather
catch a few breaks
once in awhile?
Is that so much to ask?
At some point, you'd think
you'd be entitled
to a free pass or two:
Skip this challenge.
Avoid this crisis.
Delete those problems.
It's not that you're not strong
or that you don't have what it takes
to get through this.
You are, you do, and you will.
But, you've built enough character
already, and it's time
for things to lighten up a little!

(inside)
I know it's not really my call,
but if I were in charge
of life's wheel of fortune,
you'd get a free spin.
And I'd be right there,
cheering you on!

This is all it took to put a smile on my face and make me want to come out fighting stronger and harder than ever before! Mind you that I have NEVER met this wonderful angel before and she lives 2 blocks over (I believe). All I know about her is what is on her Facebook page and our little chats here and there. But, this is the 2nd time she has left me a pick me up in my mailbox and god it feels good to know that people believe that Bennett and I WILL pull through these challenges! My morning was very sad and I didn't want to crawl out of bed but I did. And now I am ready to butt heads with Cystic Fibrosis and Celiac Disease and show these devils who is in charge. It definitely is not them and they NEVER will take charge of our lives again! Do you hear that CF & CD?!!? You better be scared!

I'm not sure if she wants it known whom she is, but she knows who she is and I cannot begin to thank her enough for all that she has done for Bennett. She truly is a blessing and I am glad to have her on our side! Thank You Angel!