Made of Gray

Short Bowel Syndrome Barium Enema

Raising the Rare ChildHolly D Gray4 Comments

This morning we took Caleigh in for her barium enema. 

They used water soluble barium upon our request (I highly recommend it if your ever in the need for barium) because of Caleigh's history with intestinal perforation. About 2000ml of barium was gravity fed into her. That's way more than she gets in fluids a day. 

Caleigh did good during the whole thing. We played her music and she focused on that instead of the uncomfortableness. 

I could quickly tell that Caleigh's intestines are very dilated. There are large sections of bowel with presumably the strictures in between, but we weren't able to see them. These are areas where bacteria thrive, nutrients aren't absorbed and the walls of the intestines are fibrous and raw. This was one of the main reasons Caleigh originally had the STEP procedure all those years ago. Caleigh's anatomy is so different that we knew that we probably wouldn't find anything specific. The radiologist preforming the test questioned the actual reason behind doing it. His attitude wasn't the best, but he did his job. 

After the test was over, we sat Caleigh on the potty and the majority of the barium came out. She was shivering, clammy and exhausted while it was evacuating. We did one more x-ray (pictured below) and then we were free to leave. 

Caleigh's tummy hurts and she tells us this everyday. She is scared and worried and I wish I could take those fears from her. Please pray for her understanding and peace with all of this. 

Eric and I could use support as well. This is definitely the "marathon not a sprint" metaphor. Seven years ago...even three years ago, I was on top of my game. I knew the next best thing, I knew who to talk to where and I was ready no matter what came our way. I'm now less patient with those that work with us. I'm more emotional and anger easily. I'm worn out by not being able to heal Caleigh's pain, stop the crying, and the physical demands on myself are finally catching up. This feeling of exhaustion is often times paired with thoughts of the future and I fall back to the reality of our lives. Staying positive, laughing it off and forever being ridiculously sarcastic is sustaining us. I'm glad we still have even an ounce of those feelings left at this point. For all of these feelings though, we wouldn't trade any of it. 

This coming Tuesday is our appointment with the surgeon. If you remember a few years back Caleigh's surgeon moved to Tennessee. We were pretty devastated by this change, but at the time we didn't need surgery. This new(ish) surgeon knows Caleigh and has been around since she was born. I'm hoping we will be on the same page come Tuesday. 

Until then, we would love prayers and positive thoughts for strength, less pain, clear decisions and the emotional well being for our little family. We really do appreciate the support that everyone offers. It is truly a gift to have this community in our lives. 


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