Summer of 2023 has been a revolving door of ERs, hospital stays, and discharges – just for it all to come full circle again. We are currently sitting in the ER after not even being discharged 24 hours ago. Poor Evelyn wasn’t able to tolerate her meds this morning and vomited them up along with some blood as well.
We’re waiting for her to fast for a few hours to do a liver ultrasound. They’re checking to see if her liver is causing too much pressure in her veins which leads to bleeds, starting in the esophagus. Hence the vomiting. We’re hoping this is not the case as this would indicate further progression of her liver disease and another hospital stay.
During her previous stay, they discovered intussusception, which is where a portion of Evelyn’s intestines folded in (like a collapsing telescope) on itself. This typically resolves on its own and after pausing her feeds for 24hrs it had cleared. Sitting here now in the ER they’ve discovered two more areas where this has happened. We’re not sure what is causing this but we do know it’s completely unrelated to her Biliary Atresia. Getting the news of another rare condition was heartbreaking. While not as serious as her BA it was still difficult to hear. Here’s to hoping this is something we can treat outpatient.
Since May we have had 5 hospital admission, each one with a shorter window in between. We only got to go home back to Kentucky for a few days during those discharges. Now they will only discharge us to the Ronald McDonald House next door here in Cincinnati since we continue to have recurring problems. These days the hospital feels more like home than home does. My prayer is that this ER visit doesn’t lead to another admission so we can finally go home and be together as a family.
Of course, Evelyn’s health is the priority so we will do whatever we need to make sure she is safe and healthy, it’s just starting to take a toll on our family. Poor Vivian misses having us home so much. She has started having these emotional breakdowns where she is just “sad” but can’t articulate why. I know it’s finally starting to get to her, how uprooted her life has been the past 9 months. She has been so strong and I pray for continued strength for Vivian just as much for Evelyn. This isn’t easy for either of my girls. Here’s to hoping Fall of 2023 will be better.