Today wasn’t the worst day we have had physically with addy, however I think it was a reminder, a slap in the face that here we are almost 12 yrs later and with a team that has known her for years and we still get deer in the headlight looks or shrugs of I don’t know what to offer next. It’s emotionally draining and frustrating for Randy and I. We try so hard to always be researching and moving towards a better plan…. A more effective treatment… A better quality of life. Today we left the er 10hours later with more questions, still no answers to my questions and no effective solution for the pain.
It’s tough…. We know we are lucky today as multiple trauma helicopters landed and two kids had full codes called on them today. I feel so much for those families and my heart breaks for them.
We are still left wanting a better plan for our child though. Leaving with no effective pain mgmt protocol that we feel comfortable with and our child who we can’t even keep in her bed post surgery has been laying around and complaining of pain for days now. It’s not normal…its not okay. Her team just keeps saying she’s complex, her pectus is severe, her history is complex. We know all this, but we need a better plan. So we will get the CT on Tuesday and go from there.
I must say ethen was so sweet…. When he left for school he didn’t know addy was headed to the er. When we got home, he said like ten times ” Addy are you ok? ” “I heard where you were… Are you ok? ” It’s so sweet to see him expressing this and asking but it’s also just another instance where I feel bad because he does worry and he never knows when we will be in the er with her while he’s at school.
Beaming with hope 