MrsHeg
DIS Veteran
- Joined
- Sep 30, 2004
- Messages
- 4,059
Well, we are supposedly having the Director of Egleston OR and Dr. W (the Egleston surgeon) both calling the head of the GI practice tomorrow to demand an appt and ask why in the world it is taking so long. Rees is just Rees... hanging in there and acting like nothing is wrong... Then I check his tummy and it is huge, hard, and he still is having all the bathroom symptoms. He is having the outpatient surgery on Thursday, so, to be honest, I'm just so stressed overall that I am just walking through the day like a zombie. I have calls into the GI, the Ped, the surgeon, his Endocrinologist. They all say don't go to the ER as we'd just get shoveled around by the ER docs and maybe seen by GI for a few minutes with an appt to be made later...
He went to Physical Therapy for the first time in 4 weeks today. His PT (who has worked with Rees since birth and is such a good friend) couldn't believe how bad he looked, how thin he is, said he shook the entire time, was so weak. It is literally killing me. I feel helpless, just like I did when I watched all 3 of them in the NICU for 14 weeks and had no idea whether they would live or not.
I eat and binge, then don't eat at all. I haven't had a drink as I'm afraid I wouldn't stop. Today I hid in bed from 8am to 1pm just crying under the covers and waiting for a call that, once again, never came.
Thanks for letting me vent and complain here. And my DH would tell you that patience is NOT my strong suit at all. But I have no idea what else to do at this point? It's just so amazing. We have EXCELLENT private insurance, fantastic docs, are in a major medical area with 2 Children's hospitals, I'm a peds nurse. What do people do who have no insurance or access or knowledge of health care? It is very, very scary.
I wish I could do more, but I will definitely be sending prayers and Pixie Dust your way.
