skimomck
March 11th, 2005, 09:40 AM
This site was so supportive last summer when I discovered this great place but since then my life has spun a little out of control -- I have been caring for my parents out of town (mom broke her hip and then 6 weeks later a spiral fracture of her tibia and dad parkinson's disease) which has involved selling their home and moving them into a assisted living facility. They are actually moving in Monday. This is such a supportive community and I have missed it.
Teddy has severe pulmonary stenosis after his Ross (12/00) and dilated aortic sinuses. This summer they tried ballooning the pulmonary valve with minimal success. He returned to college in September and was fine. He had an echo the end of December, which showed little progression, which was good. Our cardio was concerned about him though and said he felt we needed to take him to a place that has more experience with his problem. While home he had a roll over car accident after hitting some black ice on the freeway. He broke a left rib but was a lucky - the car was totaled and the wreckage did not appear like anyone would of walked away alive. After returning to school in January he become very sick for over two weeks-probably viral but it knocked him totally out of commission. Since then he has become more symptomatic with fatigue and some mild chest pain. Our cardiologist went to a conference in Colorado in February and searched while there for a place or person to send him to for a second opinion. The Mayo Clinic adult congenital cardiologists said they have had lots of experience with Ross complications. We were set up to see them during Teddy's spring break March 24th. They said they would review his records and latest cath and echo and order testing and then he would see the cardio the following day. They called last Friday and said he needs surgery now and set us up to see the surgeon-Dr. Schaaf (the following Monday) and wanted to set a surgery date two days later. We did not set a surgery date and will wait until after the appointment and make a decision then. Teddy's bleeding problem (von Willebrand's disease) needs to be assessed while we are there because it requires lots of special considerations during his surgery. They have set up all of that testing also. We will be 6 days because the surgeon was not available the end of the week.
Having a second open heart at his age is very scary to us though I know others have been through this successfully. We also don't know what the surgery plan will be- we assume replacement but we don't know and we assume they will address his dilatation on the left side, which they seem very concerned about.
Has anyone had any personal experience with the Mayo or this surgeon? The cardiologist we are seeing is Dr. Ammash. We are also dealing with our HMO, which will hopefully not give us a hard time about going out of network. They were a nightmare to deal with when he had his Ross 4 years ago.
Thanks again for listening and all the support and information you give people.
Cindy
(Teddy's nervous Mom)
Teddy has severe pulmonary stenosis after his Ross (12/00) and dilated aortic sinuses. This summer they tried ballooning the pulmonary valve with minimal success. He returned to college in September and was fine. He had an echo the end of December, which showed little progression, which was good. Our cardio was concerned about him though and said he felt we needed to take him to a place that has more experience with his problem. While home he had a roll over car accident after hitting some black ice on the freeway. He broke a left rib but was a lucky - the car was totaled and the wreckage did not appear like anyone would of walked away alive. After returning to school in January he become very sick for over two weeks-probably viral but it knocked him totally out of commission. Since then he has become more symptomatic with fatigue and some mild chest pain. Our cardiologist went to a conference in Colorado in February and searched while there for a place or person to send him to for a second opinion. The Mayo Clinic adult congenital cardiologists said they have had lots of experience with Ross complications. We were set up to see them during Teddy's spring break March 24th. They said they would review his records and latest cath and echo and order testing and then he would see the cardio the following day. They called last Friday and said he needs surgery now and set us up to see the surgeon-Dr. Schaaf (the following Monday) and wanted to set a surgery date two days later. We did not set a surgery date and will wait until after the appointment and make a decision then. Teddy's bleeding problem (von Willebrand's disease) needs to be assessed while we are there because it requires lots of special considerations during his surgery. They have set up all of that testing also. We will be 6 days because the surgeon was not available the end of the week.
Having a second open heart at his age is very scary to us though I know others have been through this successfully. We also don't know what the surgery plan will be- we assume replacement but we don't know and we assume they will address his dilatation on the left side, which they seem very concerned about.
Has anyone had any personal experience with the Mayo or this surgeon? The cardiologist we are seeing is Dr. Ammash. We are also dealing with our HMO, which will hopefully not give us a hard time about going out of network. They were a nightmare to deal with when he had his Ross 4 years ago.
Thanks again for listening and all the support and information you give people.
Cindy
(Teddy's nervous Mom)