U of M

[Guest guest]

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.â€

— Eartha Kitt

[Guest guest]

I reread this and hit send before saying thanks to any and all responders! I am

so grateful to have found this wonderful resource!!

- Kim

“I am learning all the time. The tombstone will be my diploma.â€

— Eartha Kitt

[Guest guest]

I don't have any great advice regarding the hospitals and docs but I do feel for

you! My oldest daughter was born with a diaphragmatic hernia and spent a week

on ECMO and her first 32 days in the NICU. She is now 15! She has high frequency

hearing loss as well but is healthy otherwise. I also have a 2 year old who has

PMG along with many other diagnosis. I can't imagine dealing with both diagnosis

and journeys at once like you are! God bless you!!! I also have an 11 year old

who is healthy! All girls and I'm a single mom. We call our home estrogen

acres!! Lol.

Jodi

Sent from my iPad

> 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.â€

> — Eartha Kitt

>

>