So while I want to believe the answer is yes to the dreaded question we have all been asking the last few days we have been struggling to see the yes. The question is did we improve quality of life with the ostomy. Since getting it not even three months ago she has been inpatient twice and had three emergency department visits. She has had so many skin and bag issues we can’t even count and she now has an ng tube. We were supposed to be better (not cured but better) after the ostomy. Yet the last few days we have been in constant contact with her surgical team and Gi team discussing Gi bleeds, hernias, dehydration and a Gi cleanout. So tonight we continue to pump through her ng and hope for improvement. Hope for the bag to stick and hope for less pain. Please chop, have a step In the right direction for us. Have a medication that we haven’t tried that might help. Or have her dr there understand this disorder and how to keep her pain levels in check. Tonight we snap heat packs and wait for tomorrow.
Thank you today to the amazing gps team. She had a great resident and attending today. The surgical attending even put her new wafer and bag on. He said since he’s the one who took it off he would reapply the new one. Both the attending and resident went and gathered the supplies themselves. They didn’t ask a nurse to do it they just did it. The resident joked with her about try really hard not to output she chuckled. He said if you do no worries we will clean it all up. Somehow she didn’t. Yet everytime I go to change that thing it wakes up and goes crazy 😜. They were two of the kindest, gentlest, caring gps team members we have ever dealt with. She even told them about Charlie the resident (her friend) and how she didn’t want him to be on today because he always admits her. I love the gps team there we really do trust them, just wish their Gi team understood motility disorders. We are anxiously awaiting our chop appointment
4 thoughts on “Long day in the emergency department and are we really any better”
As always I’m out here rooting for Addyson and continuing to hope for the best. I’m also hoping you take care of yourself too mom. It’s such a stressful journey! 🧸❤️
Thank you Karen. We appreciate all the positive vibes
I’m pulling and praying for Addyson.
Thank you. She’s so strong. She keeps going so we keep fighting for a better plan.