Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 We are with the Cleveland clinic and phone tag is not unusual. But, we have one office and do everything through them. Calls all returned within 24 hours. This has been my experience all over the country - and when it wasn't we found a new hospital. It's more about the doctor than the hospital in my experience. Good luck! The neuro team at Cleveland clinic is amazing!! Sent from my iPhone > My son is 8 months old. He couldn't breathe when he was born due to diaphragmatic eventration and was emergency transported to the University of Virginia Nicu. 6 days of ECMO and several weeks later we had a diagnosis of diaphragmatic eventration and diffuse pmg on the left side of his brain caused by congenital cmv. He underwent surgery for the diaphragm problem and a week later was breathing room air. And a week after that was discharged. My family and I have since relocated to mid MI area to be closer to our families. Which brings me to my main reason for posting here. We are having a hard time with the U of M health system. We don't doubt their ability just not in love with all the disorganization and the constant phone tag we play with our specialists. Our experience with the hospitals and docs at UVA was so positive and so amazing it was hard to leave them behind, and now we are starting to regret our decision to move altogether. My son is deaf in one ear and has high frequency loss in the other ear and audiology and ent here want to put him under general anesthesia and intubate three or four times a year for his testing. Given his pulmonary issues we are not comfortable with this decision and we keep getting passed around from department to department to get questions answered regarding alternatives. Fortunately my husband just found alternative testing at CMU that doesn't require sedation. I guess I am hoping to hear what others have to say. Is this an isolated incident or is U of M just generally hard to deal with? > > “I am learning all the time. The tombstone will be my diploma.†> — Eartha Kitt > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2011 Report Share Posted July 25, 2011 Our pediatrician at UVA was top notch, so I think that may be part of the problem. She was our one contact person. She handled everything. It felt like we were a working as a team with her and not just another number. You know what I mean? We could call or email her anytime and she knew most of the other specialists we were dealing with so she would contact them on our behalf to get answers or request appointments or check for test results. We knew the transition wasn't going to be easy but this is getting a bit ridiculous. I am uncertain at this point if my son is or is not scheduled for his hearing test. Everytime I call to talk to someone they transfer me and then tell me they'll call back. Plus we have been waiting to get a neuro consult there for over a month. They finally called to schedule but I missed the call. I called back and was told they'd call me right back and I have yet to hear from them again. It's just frustrating because as you all know in addition to playing phone tag with docs we have a bazillion other appts each week with all the therapies. I must say the Earlyon program in MI has been great. Early Intervention in VA was wonderful as well. Only wish our medical centers could be as smooth sailing. Sorry for rambling. Needed to vent. I figure most of you will much better understand my frustrations. Venting to friends and family with " normal " infants isn't always helpful. Thanks!! “I am learning all the time. The tombstone will be my diploma.†— Eartha Kitt > We are with the Cleveland clinic and phone tag is not unusual. But, we have one office and do everything through them. Calls all returned within 24 hours. This has been my experience all over the country - and when it wasn't we found a new hospital. It's more about the doctor than the hospital in my experience. Good luck! The neuro team at Cleveland clinic is amazing!! > > > > Sent from my iPhone > > > > > My son is 8 months old. He couldn't breathe when he was born due to diaphragmatic eventration and was emergency transported to the University of Virginia Nicu. 6 days of ECMO and several weeks later we had a diagnosis of diaphragmatic eventration and diffuse pmg on the left side of his brain caused by congenital cmv. He underwent surgery for the diaphragm problem and a week later was breathing room air. And a week after that was discharged. My family and I have since relocated to mid MI area to be closer to our families. Which brings me to my main reason for posting here. We are having a hard time with the U of M health system. We don't doubt their ability just not in love with all the disorganization and the constant phone tag we play with our specialists. Our experience with the hospitals and docs at UVA was so positive and so amazing it was hard to leave them behind, and now we are starting to regret our decision to move altogether. My son is deaf in one ear and has high frequency loss in the other ear and audiology and ent here want to put him under general anesthesia and intubate three or four times a year for his testing. Given his pulmonary issues we are not comfortable with this decision and we keep getting passed around from department to department to get questions answered regarding alternatives. Fortunately my husband just found alternative testing at CMU that doesn't require sedation. I guess I am hoping to hear what others have to say. Is this an isolated incident or is U of M just generally hard to deal with? > > > > “I am learning all the time. The tombstone will be my diploma.†> > — Eartha Kitt > > > > > > Quote Link to comment Share on other sites More sharing options...
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