Medical Jargon

Stephanie is currently being followed by the Pain Management Team, General Surgery, Urology, GI, and Genetics at Toronto's Hospital for Sick Children.

The Pain Team
Stephanie is taking several meds prescribed by the pain team: Gabapentin, Advil, and Tylenol. She is working very hard with the team psychiatrist to find better ways to control her anger and vent her frustration. Stephanie has a bag of tricks to help her through the painful events, such as a soft ball to squeeze the pain away, a wind mill to blow the pain away, an mp3 player to distract her, a soft fabric doll who undergoes all the procedures Stephanie does, her favorite doll for comfort, and finally her imagination, which can take her anywhere she wants to go.

Under GI's care
Stephanie is followed by a GI doctor, but has most of her contact through her GI nurse and G tube nurse. She has had a difficult time with her tube and has granulation tissue causing her discomfort. We now have a button in, but she is still having trouble so we are going to change it to a smaller button this week. The G tube nurse, the clown and mommy will be the helpers in the first in-office tube change for Stephanie.

Stephanie is also taking rolling doses of antibiotics for bacterial overgrowth which really has been helpful. She has been on Cisipride in the past, but had rash reactions to the drug and is currently taking Domperidone.

The Surgeons
Stephanie's surgeon has been the one person who has stood by her since birth. He has believed in Stephanie when she was insistent about issues which are always very unclear. When Stephanie says she needs to see her surgeon, he really takes her word seriously and follows her direction. Stephanie has been about as far from a text book case in her many battles as is possible. She defies the diagnosis and proves us all wrong in each and every case.

Urology
Stephanie has Urinary Reflux and is followed by the Urology team at Sick Kids. She has been off her medication for several months and is doing well. Let's hope this trend continues!

Stephie's Page

Stephie's Page

Why the Clowns?
The clowns at Sick Kids hospital have been instrumental in Stephanie's care. When she was a baby they helped her then 2-year-old sister get through the many long hours we spent together at hospital trying to maintain some sense of a normal family life.

Now the clowns are what get Stephanie through her long hospital admissions, her pain and frustration. They are the ones who can push the pain aside and allow silliness to take over. Stephanie's deep-down belly laughs are rarely heard other than when the clowns are around. Stephanie and her older sister have been selling Kool Aid and beaded necklaces to raise money for the therapeutic clown program at Sick Kids. The have so far raised $113.50 and counting......

Stephie's Page