Makenna’s Dual Diagnosis

Wish kid Makenna waiting on a wish - Kids Wish Network

“Her surgery should have taken 4 hours but ended up taking 14 hours”

As the expression goes, if at first you don’t succeed, try, try again. In early December 2013, 9-year old Makenna unexpectedly fainted in school so her family took her to their local hospital where she spent the night. Their daughter’s initial tests indicated she was simply anemic. Sent home for the weekend, she didn’t seem to improve so she went back to her doctor for additional blood work. Her family had barely gotten back home when the doctor’s office called telling them in no uncertain terms that Makenna needed to return to the hospital – she was bleeding internally.

Back at the hospital, an endoscopic procedure (a non-surgical procedure) pinpointed the precise location of the bleeding, and she was diagnosed with a portal vein thrombosis or a blood clot blockage of the portal vein (the blood vessel that brings blood to the liver from the intestines). The typical procedure used to stop this type of internal bleeding involves placing rubber bands around the veins. Banding was performed three separate times on young Makenna’s veins and still, her bleeding could not be stopped.

Since the initial treatment was unsuccessful, Makenna was then sent to a children’s hospital in Chicago, seven hours from where she lived. Now, a surgical procedure was required: a shunt needed to be inserted to decrease the pressure in her veins and stop the bleeding. What should have been a four-hour procedure ended up taking 14 hours. While the exceptionally long surgery was successful, Makenna then required a week’s hospitalization and three weeks of outpatient follow-ups in Chicago.

Thinking their daughter’s hospital visits were over, the family returned home only to discover that her belly was now swelling in size. They sent their Chicago-based physician a photo of her stomach, and he said they needed to come back to the Windy City right away. Makenna had developed a lymphatic malformation from the recent abdominal surgery; her body was no longer processing fats correctly causing her stomach to fill with fluid. For the next three months, Makenna was fed intravenously several times and placed on a no-fat diet. Despite these adjustments, her belly was still retaining fluid and her eyes were sinking in from malnutrition.

Next, the family was sent to Philadelphia to see a specialist who placed a drain in Makenna’s belly, removing almost 15 pounds of fluid. The doctor then tried a procedure which injected a glue-like substance in her lymphatic system to stop further fluid production. While she was sent home, it wasn’t until the third monthly injection that the “glue” finally held and her body stopped producing the unwanted fluid. If all of that were not enough, Makenna then developed a bowel obstruction which was quickly treated by her doctor.

Makenna is still monitored by and sees physicians in multiple states. She now takes a blood thinner and still has not returned to full activity. One of the ways she is occupying her time these days is by watching YouTube videos about makeup and fashion. This kind-hearted social butterfly may be just 12 but she’s actually starting to think that some day she might become a doctor so she can help other kids who have had more than their fair share of doctor visits.

Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Makenna; check back later for more details about her wish experience!

 

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Kids Wish Network is a charitable organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations. Kids Wish Network assists children and their families through several key programs.