How talking with your teen can save their life! Nevada's Story

Nevada ulcerative colitis, j-pouch, teen,

When your child is an infant and can’t communicate what hurts or how they’re feeling it can be terrifying. You look forward to a time when they can articulate what their needs are so you can help them. Just as you think you’ve got it all figured out they become preteens and you may well find yourself right back in the dark when it comes to communication.

Lesa Wilson knew that her preteen daughter was experiencing some cramping and bleeding, but in that typical pre-teen way, Nevada, Lesa’s daughter didn’t share just how bad it was. Still, Lesa took her daughter to the doctor, but the extent of the problem still wasn’t revealed.  Thankfully, Lesa kept a watchful eye over her daughter,  “I started to notice how pale Nevada was getting, and at the same time she began to have fainting spells.” Concerned about her observations, Lesa took her daughter to another local hospital where she worked at the time,  “(T)hey FREAKED OUT when her blood levels came back at 5.5 when they should have been at 13.  They gave her two units of blood to stabilize her and transferred her to TMC for Children by ambulance.”

Having lost 50% of the blood in her body, Nevada was hospitalized at TMC for Children for five weeks until she stopped bleeding. After a multitude of procedures including an endoscopy and a colonoscopy Nevada was tentatively diagnosed with Ulcerative Colitis in October 2010.

Nevada stayed in remission for exactly three years until this year.

The progression of the disease was much quicker  this time and Nevada was hospitalized for four weeks. Again, Nevada was treated with steroids and this time two treatments of Infliximab, a medication for those who haven’t responded well to steroid treatment. Nothing seemed to work and talks began of surgically removing her colon.

As a mother I wanted to know that we had tried everything possible and that we were certain that the diagnosis was correct. That it wasn’t Crohn’s disease.  The physicians and staff at TMC for Children used cutting edge technology when Nevada swallowed a large pill sized camera that took eight hours of video as it journeyed through her small intestinal tract before making its exit.  This procedure in conjunction with various lab tests, resulted in a 98% assurance of the diagnosis of Ulcerative Colitis.

At this point Nevada had exhausted all treatments and further ones would only bring on other serious illness such as cancer.  Seeing the excruciating pain my daughter was living through made me realize that it was time for the surgery. The doctors told us that about 50% of the time they could make a “J pouch” that would provide the function of the colon without having to resort to a illiostomy (external bag). She was released from the hospital for a week to give her body a break from all the drug treatments.  She returned on November 12. She was scared that she would not know the outcome of the surgery until she woke up, but supported by the Child Life Specialists who talked to her and assured her she was in good hands.

I felt faint as Dr. Stafford of the Tucson Pediatric Surgeons walked toward me after a seven hour surgery, but the news was great!  Everything went well and they were able to reconstruct her small intestine.

Unfortunately, the celebrations were short-lived as she began having stabbing pain five days post operation.  A CT scan showed there was free floating fluid inside the cavity of her body.  Fearing a leak they put her under to drain the area.  Just ten minutes into the procedure they called me in as she had aspirated and inhaled it into her lungs.  She spent the night in the PICU and returned the next day to successfully complete the draining of a clear fluid, thank God!  This was just swelling from the long surgery and not a leak.

Finally, exactly  eight-weeks after arriving at TMC for Children, 14 blood transfusions, and numerous procedures, Nevada was given a tearful farewell from the nurses she had become so fond of over the years.  Although we love them dearly we hope to only see them during visits and not hospital stays!

TMC has always had a place in my heart as they have treated so many in my family, and this experience was no different.  From the caring staff to the top-notch facilities we received the best treatment and as a result Nevada aspires to help others by becoming a child life specialist while studying to become a nurse. She is my miracle baby and TMC was my miracle fixer!

CMNDonateNowNevada’s experience at TMC for Children has inspired her to become a Child Life Specialist. Child Life Specialists are specially trained medical professionals that work with children and their families to meet some of life’s most challenging situations. The Child Life Specialist program at TMC for Children is supported by funds raised by the Children’s Miracle Network. For more information on the power of child life specialists check out these blog posts. Know that your support of this program makes the difference for local children every single day.

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