On May 2, Alyssa received occipital block and her TAP block from Dr. Dickerson at the pain clinic. These are to help with her occipital neuralgia (a type of headache) pain and the abdominal pain she gets when she eats. 

On Tuesday, she had surgery to get rid of her G-J tube and replace it with separate G and J tubes. The J tube is now placed quite deep in her jejunum and the surgeon assures us that even if it moves a little, it will not cause food to go into the stomach, so it is much more stable and she will not need to keep getting it replaced. The jejunum has been stitched to the abdominal wall. I didn’t think to ask why when talking to the surgeon but some quick research says it’s to avoid a torsion or twisting of the jejunum. Basically, keeping it more stable/in place. 

This is usually an outpatient procedure, but people with Ehlers Danlos Syndrome/Hypermobility Spectrum Disorder struggle much more with pain control and recovery from surgery is known to be a little tougher. Because of this, it was planned for Alyssa to be in the hospital for a few nights. It’s been rough going for her, but we’ve adjusted her pain medications and are hoping to take her home tomorrow. 

Next step is to get a gastric stimulator placed. This is like a pacemaker for the stomach that will provide electrical stimulation to the enteric nervous system and hopefully help Alyssa be able to tolerate eating again. We actually planned to do it at the same time as this surgery but it has initially been denied by insurance. Our surgeon is confident it will be accepted once he writes his appeal, so we will see. 

Meanwhile, we saw Alyssa’s neurologist on Monday and she wants to do a few MRIs that won’t be able to happen once the stimulator is placed, so all things are working out as need be for now. 

Alyssa’s appointment with Dr. Kincaid was promising. She brought up a few new things that we are going to look into. I continue to be impressed as she has put a lot of thought into Alyssa’s care. She has plans A through Z that she will systematically go through and she is very set on finding the root cause of things, not just slapping bandaids on. For example, the feeding tube is a band aid. It’s important, but still a band aid. But what has happened to make Alyssa struggle to eat, how do we correct that and ultimately get her eating normally again? I am so grateful to have someone who is willing to dig in, even when it’s a long and frustrating journey. And I am hopeful that one of these times, I’ll be writing that we have some solid answers!!