Has Grace had any surgeries? We are asked anytime we are updating records or seeing a new provider.
She’s had a GI Tube in 2006 and a Nissen Fundoplication in 2007. She’s had a Corpus Callosotomy in 2010 where the corpus callosum was removed between the halves of her brain…this is usually where jaws drop and then we continue that she has a Vagus Nerve Stimulator (VNS) in 2013, I would say about only 30% of the medical professionals we talk to know what a VNS is. Now added to that list are Mitrofanoff in 2016 and while it’s a pretty routine procedure we get to add an IV Port.
Grace is nearly a bionic girl, she’s certainly as strong as one! Most of Grace’s diagnoses indicate a lack of something, a weakness or inability to do something; yet Grace finds her own ways to do things and is stronger than what meets the eye. The port surgery was successful and went relatively quick. She was able to start using it immediately and has been getting additional nutrition for several hours already. Grace is starting to move around a bit more and fight back even more when respiratory therapy comes in for treatments; this is a good thing.
We are still waiting for the drainage from her NG tube to decrease, she needs to be at less than 30ml per over 12 hours before we can disconnect the suction and allow for a gravity drip. This change will likely be over the weekend and she will need to meet another goal while on the gravity drip, once this is met we can begin giving her Pedialyte and start her back on her regular medications. We will then begin moving her back onto her regular feedings but it will take some time to increase the volume. It will also take some time to increase her medications as she will need to titrate back to previous dosages.
While we wait here’s a video from Grace’s first dance recital.