Had to share
I just had to share my news. After dealing with Dr. Blakemore at childrens for almost a year now and having such difficulty with her, we've finally decided to go to Dr. Betz at Shriner's Hospital. We sent off the application and a letter to him last Thursday and my husband got called by his PA yesterday to get some more information.
For those that don't know my story - my daughter was born with 3 major birth defects:
1) Pulmunary Artresia/Tetrology of Fallot - had open heart surgery at 8 days old and will have at least 2 more.
2) Cystic Kidneys - Only one is working
3) Congenital Scoliosis - she also has fused ribs. We have hemivertebrae, butterfly and fused.
The doctors for both the heart and kidney have been absolutely fantastic with her and working together so we decided to stay with the orthopedic dr (Blakemore). However, from the get go - I did not have warm fuzzies with her. My husband figured she and I just butted heads - so he mainly dealt with her from that point on. However, they wouldn't coordinate with the other doctors at all. When I started asking how VEPTR would affect her future heart surgeries - I got "What she's going to have more?" Then she told me she would talk to the cardiac surgeon/staff. She never did - it took me finding the procedure booklet and giving it to the cardiologist who checked with the surgeon who said it shouldn't be a problem on his side. Then she was scheduled for an MRI - but they didn't tell radiology that Emily needed an anesthesiologist - so if the sedation nurses hadn't called the night before she was supposed to go in - we wouldn't have wasted a day down there. You would think they would have learned their lesson - NOPE. We were scheduled for a CT Scan in late May, but this time we assumed they had gotten the anesthesiologist - we were wrong. I took off work to go down there to find out they couldn't put her out for it and they'd have to reschedule. It was after that I finally had it with this office.
So I've got a really good feeling about meeting with Dr. Betz. I was just so excited I wanted to share
Erin - Mother to Emily who was born with:
1) Pulumnary Artresia/Tetralogy of Fallot
- 2 conduit replacement surgeries
- 2 stents inserted in conduit
2) Congenital Scoliosis (9 incomplete vertebrae - 2 hemi)
3) Cystic Kidneys
- Right one non-functioning
- Left one growing and working well