Vivienne’s medical support

Vivienne was two weeks old when we first noticed her arm twitching during a feeding. We didn’t know what to make of it but it was worrisome. After watching it happen a few more times, we made a phone call to the pediatrician who told us to go to straight to hospital, where we found ourselves confronted with a deadly infection and a lengthy hospital stay.

               Vivi was initially diagnosed with viral meningitis, an inflammation of the lining in the brain. However, after an MRI the next day, it was determined that she was suffering from encephalitis, which meant that the inflammation was in her brain. The prognosis was unknown but it required a three-week hospital stay to treat the infection with intravenous anti-viral drugs.  Thankfully, the infection was treated but the damage was done and is permanent.

                Vivienne has suffered encephalomalacia as a result of the infection, which is “the softening or loss of brain tissue after cerebral infarction, cerebral ischemia, infection, craniocerebral trauma, or other injury.” Basically, there are parts of her brain that have softened and died and won’t grow back. While we don’t know exactly how this will affect her, we have been told by two pediatric neurologists that we should expect some developmental delays. There’s no way to know or anticipate how or when these delays will manifest but we are doing everything we can to help her close any gaps that may arise.

               As if this weren’t enough, Vivienne had an NG feeding tube placed through her nose and into her stomach to provide nutrition during her hospital stay. Her feeding skills and interest have fluctuated wildly since this tube was placed and unfortunately, she now refuses to eat on her own and is entirely dependent on the tube. An NG tube is a short-term solution and as a result, she’s now going to have another surgery to place a Gastric Button, which is a port directly into her stomach that we will feed her through.

               We’ve got a long road ahead of us. We have two to three appointments per week with physical therapy, her primary care physician, speech pathology, a gastroenterologist, and more. With all these appointments and a surgery upcoming, BreAnna has been unable to return to work and the expenses keep adding up. Any amount donated will go directly to Vivienne’s care and well-being. We are blessed to have great insurance but even with that, our expenses continue to add up.  Despite all of these hardships, Vivienne's outcome could have been much worse and with the support of our friends and family, we will work to make sure she grows up to be the blessing she has already been to us. Thank you for your outpouring of love and support.