Waiting for a date

[Scrappergirl]

Joined the forum a couple of weeks ago and have learned lots from reading. My son, 5 years old, is waiting to get a date for surgery. He had his first at 4 months at Lucille Packard's (VSD repair but when opened found out he had pulmonary stenosis, small ASD and aortic stenosis). Things were going well til Oct 28. The cardiologist broke the dreaded news that we were hoping wouldn't come for a long time. His pressures had changed and he was recommending that he have surgery by the end of the year. His records were sent to LPCH and were reviewed. They agreed he needed surgery. Our Cardiologist talked to Dr. Hanley (did his first) and he agreed to re-arrange his surgery schedule as he was booked up til the end of the year.
So we still don't have a date, Hanley has been at conferences last week, in London this week and so we wait. Our cardiologist is saying if we don't get a date on his schedule by the end of this week, he will look at another hospital. We are really wanting to stay with Hanley. So not sure what to do. They are recommending the Ross Kono procedure. Sorry to be so long winded but just a lot of frustration to top off the anxiety.

 

[Phyllis]

You might want to take a look at all post by Isfahan- her child just had surgery by Dr. Hanley and you might want to pm her.

 

[gijanet]

I second Phyllis!

I second Phyllis!

Just what I was going to recommend. Her son is still recovering, so you might want to shoot her an e-mail from this site. I know firsthand what you are saying about wanting to stay with Hanley since he did your son's first surgery. Although Dr. Bove did not perform my daughter's first surgery at two weeks of age since we were still in the NICU here at home, we made repeated surgical trips to Michigan for the very reason you are wanting to stay with Hanley. Besides trusting him implicitly, we knew that he knew her very complex anatomy like no one else and even made notes after each surgery to help him prepare for the next one.

I'm not sure why your cardiologist is not willing to wait a few weeks for Hanley since Hanley is willing to work your son's case into his schedule. Is there something your PC is not telling you? Does he feel like your son is so critical at this point that he can't wait? It didn't sound like it from your post and all of the best pediatric heart surgeons stay booked months in advance. I think he would have to present a pretty good argument as to why you should seek a surgical opinion from someone else (which seeking out second opinions never hurts. I think they are good for peace of mind purposes if nothing else. We sought out five before we selected Dr. Bove.) If he is just wanting to get a second opinion, I would go along with it. After obtaining that opinion, then I would go with the surgeon you feel most comfortable with. If you want to stay with Hanley, and for some reason, your PC disagrees, well, it's your kid and your choice and your PC can go suck an egg. Just my two cents.

BTW, welcome to the group, but I am so sorry you have a need to be here. Keep us posted and good luck. Hugs. J.

 

[gijanet]

P.s.

P.s.

I have a friend here in our local heart support group whose daughter had the Ross by Hanley several years ago. She did well, although she did just have to have her PV replaced last year, but they knew that was part of the package when they agreed to the Ross. If you would like, I could get hold of Jamie and hook you guys up. More hugs. J.

 

[hensylee]

oh, I am so sorry to hear about your child. It is hard enough for us big ones, but our heart aches when it's a wee one. May God keep you all in His hands and bless the child. We have other members whose children have had heart surgery. Glad you are here with us. this is a great group for information and suport. Blessins..........

 

[skeptic49]

Just a note of support...and to express my sincere best hopes for your child's recovery.

Jim

 

[Eva]

Sorry to hear about your little one's ordeal. My prayers are sent to you and to your family to be guided to the right decision.

(((Hugs)))

 

[Scrappergirl]

I have been watching Isfahan posts and had left her a pm prior to the surgery. They have been busy! I will talk to our Cardiologist on Monday if we don't hear anything. Bad thing about where we live is he is the on pediatric card for miles and miles. So without traveling to Denver, Seattle or SLC, we can't easily get a second. Plus he has been with us since Landon's birth, actually diagnosised him before birth. So I have been praying that something opens up. When I last talked to his office, the scheduler did say that something opened on Dec 10, but he (hanley) likes to do long surgeries (10 hrs) on Wednesdays. So who knows. Hopefully we will find out on Monday since he is back in the office. Thanks for the thoughts and prayers, I greatfully appreciate.

 

[Scrappergirl]

Oh btw GIjanet, I would love to talk to your friend Jamie. I would like to understand the recovery time of her daughters surgery and the age that she had it, etc.