We ended up leaving the hospital after two weeks, but with as many questions and four new medications. His intestines never went back to “normal,” but he slowly started to tolerate eating via the g-tube again, meaning no spitting up and with normal bowel movements. (Side note: I’ve never cared so much about poop as I have as a mother. Too much? Too little? Color? Consistency? High fives when he poops after a week? Yup, that happened.)
During the last few days in the hospital, he started having episodes where he cried hysterically for hours at a time. He has had these episodes before, but we always attributed it to some sort of medication change or withdrawal. After they ruled out other potential causes (e.g., infections), they said it was most likely “paroxysmal sympathetic storming” episodes. These episodes are more typically associated with traumatic brain injuries, but could be happening to Emmett because of his neurological condition. It’s basically when there “is excessive, uncontrolled activation (‘storming’) of the Sympathetic Nervous System (SNS). The SNS is responsible for the control of body arousal, which includes increasing heart-rate, respiration, perspiration, release of adrenaline and other activating hormones, which all characterize the bodies stress response.” (This site has a pretty good fact sheet on it.) In Emmett, it manifested as hours-long screaming fits where he would stiffen his entire body, his blood pressure would shoot up and he would sweat profusely. They ultimately prescribed two different medications to help control these storming episodes, Gabapentin and Clonidine, which seemed to help.
We got discharged late on April 5, and since then, have been trying to find a medication/feeding mix that works. He hasn’t been able to take his usual volume in food because his stomach has been getting distended every day, so we’re back to urgent care tomorrow to see what we can do.
That said, we are very glad we got discharged when we did because we came home just in time to celebrate his first birthday. And I know I’ve said this many times, but we are so grateful for the help, support and understanding of everyone around us. Steve and I have, on many occasions, talked about what a relief it is that we can be open about Emmett’s condition, and not only do most people understand, they go out of their way to try and help. So while all of this isn’t easy, that part does go a long way to help in our lives.
This past year has truly been a journey filled with so many highs and lows I tear up just thinking about it. I’ve tried to put that journey in words these past couple weeks, to really express all the complex emotions that go into it, but I just end up a ball of emotions, so will leave that for another time. Thanks for taking the time to read up on how Emmett is doing, and for all the feedback we’re getting. Our Seattle trip to the clinic there is booked and around the corner, so will look forward to writing about how it went. Oh, and here are some cute pictures from this past month. 🙂
Thank you for your continued posts sharing your journey. He is a very beautiful little man, clearly loved by many. Please let me know if there is anything I can ever do to help.