Last Wednesday, I thought it was time to fill Sophie's local neuro in on the latest events. I told him everything and he agreed that surgery would give Sophie the best possible outcome at this time. I also explained that I did not think St. Louis Children's Hospital (SLCH)** would be interested in Sophie case. When Sophie was 10 month old, I had took her to the Epilepsy Center at SLCH to get a second opinion. He said he respected the neuro I had met with and that even though SLCH might not want to take on Sophie's case, that neuro might still agree that surgery is the best option for Sophie at this time.
So, I called first thing Thursday morning and his first available appointment was in August. I explained that August would be useless since Sophie is scheduled to have surgery in July. So the receptionist said that she would talk to the doctor and see what he wanted to do. A few hours later, the phone rang and it was him. I was quite surprised. It took 2 months to see this doctor initially, so the last thing I was expecting was a call from him directly. I explained everything and he said that he would present Sophie to their surgical conference that meets every Monday but it would not be next week because they were a little back logged with presenting cases. He wanted to talk with the neuro I had met in the hospital last month while Sophie was getting her EEG because she was most familiar with Sophie's current situation. Less than 30 minutes later, he called back saying they had an opening this Monday (today) and that he and the other neuro would be presenting her case. All I needed to do was drop off the CD with Sophie's latest PET scan and MRI that was done in Detroit. He said that it was a good thing I had the EEG done in St. Louis because they do not rely on other hospital's EEG.
On Friday, I received a call from the neuro I had met in the hospital to get more information regarding Sophie's current situation. She said that I would get a call either Monday or Tuesday with the results from the surgical conference.
I feel so incredibly fortunate to have so many doctors interested in Sophie's case. Though it may put a small doubt in my mind if SLCH believes Sophie is not a surgical candidate, I have to remember that they are conservative and that Sophie is not a typical surgical candidate. But if they do believe she is a surgical candidate...I'll just feel that much more confident. Because even though it is hard to come to terms with brain surgery, I know I have found the best in Dr. Chugani and his team.
**In 2008, U.S. News & World Report recognized St. Louis Children's Neurology/Neurosurgery as 6th-best program in the nation.
So, I called first thing Thursday morning and his first available appointment was in August. I explained that August would be useless since Sophie is scheduled to have surgery in July. So the receptionist said that she would talk to the doctor and see what he wanted to do. A few hours later, the phone rang and it was him. I was quite surprised. It took 2 months to see this doctor initially, so the last thing I was expecting was a call from him directly. I explained everything and he said that he would present Sophie to their surgical conference that meets every Monday but it would not be next week because they were a little back logged with presenting cases. He wanted to talk with the neuro I had met in the hospital last month while Sophie was getting her EEG because she was most familiar with Sophie's current situation. Less than 30 minutes later, he called back saying they had an opening this Monday (today) and that he and the other neuro would be presenting her case. All I needed to do was drop off the CD with Sophie's latest PET scan and MRI that was done in Detroit. He said that it was a good thing I had the EEG done in St. Louis because they do not rely on other hospital's EEG.
On Friday, I received a call from the neuro I had met in the hospital to get more information regarding Sophie's current situation. She said that I would get a call either Monday or Tuesday with the results from the surgical conference.
I feel so incredibly fortunate to have so many doctors interested in Sophie's case. Though it may put a small doubt in my mind if SLCH believes Sophie is not a surgical candidate, I have to remember that they are conservative and that Sophie is not a typical surgical candidate. But if they do believe she is a surgical candidate...I'll just feel that much more confident. Because even though it is hard to come to terms with brain surgery, I know I have found the best in Dr. Chugani and his team.
**In 2008, U.S. News & World Report recognized St. Louis Children's Neurology/Neurosurgery as 6th-best program in the nation.
5 comments:
Awesome! Would you consider having the surgery at SLCH, if they agreed? I know Dr C is great, but being near home might make it easier, for you and the new baby, for the family to visit, etc.
Did not realize you are a St. Louis native. That's where I was born. In St. Charles actually, but darn close. Is there a St. Joseph's Hospital in St. Charles? I seem to have a vague memory that this is the name of my birthplace.
Jen...It would be wonderful to have the surgery so close to home but I can't imagine anyone else besides the surgical team at CHM doing the surgery. Maybe if Sophie's case was more straightforward it would be different. I am hoping to set up the intense rehab after surgery at SLCH.
Ken...I'm not familiar with St. Charles. But there was a St. Joseph's hospital in Kirkwood that just closed last month.
Oh Elaine I SO relate! Being close to home is a huge advantage...and one of the biggest reasons why I was pushing for Boston. I have to say...it never crossed my mind to give them a "second chance"...but who knows...
Anyway...
Even if they do decline surgery for Sophie...you have Chugani on your side. I know a family here...who Boston being more conservative declined...and they had to go to Detroit. And are SO thankful that they did.
That said...if it works out closer to home...that would be a great option for you!
...danielle
Wow...Y'all are getting popular! Yes, I agree...If these docs agree with the others, then it would DEFINITELY make me feel better about surgery....But even if they don't think she is the best candidate, like you said, they are conservative...Hopefully this will be nearer to your home, and that ALWAYS helps....I will keep following and sending up prayers...
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