Monday, 11/14/05

(Karen's words)

For those of you that have been praying regarding our recent dilemma regarding Callie, I think you'll find this quite a testimony.

BTW, Callie's history is on her pages at www.childrenofpromise.net and www.kidsneedprayer.net

I believe we have received our answer to prayer and it is no less than a miracle. Let me start from the beginning (which would be from my last prayer request):

Apparently Dr. Hanley is the TOP surgeon for Callie's defect. We have only one shot at surgery for Callie, we can't go back and undo a decision. It's all or nothing. Callie won't be seen until January if we go with Dr. Hanley. Children's Hospital of Boston wants Callie flown there this week and a Dr. Lang will work on her. We had the weekend to decide what to do. With Hanley's extensive qualifications, Joe was leaning towards San Francisco. I, on the other hand, was leaning toward Boston. I was talking to a good christian friend who said "the Lord will have you on the same page by the time you need to make the decision". Again, we only had two days. I got online and researched both doctors. Dr. Hanley is one of the three top surgeons in the country and has literally written the book on Callie's defect. Articles have been written about Frank Hanley. He is the highest paid surgeon in the country. Just about everything known about Callie's defect comes from his and his team's experience. Boston, on the other hand, while exceptional in many areas of cardiology does not even have a cardiothoracic dept. I couldn't find more than 4 hits on Dr. Lang and nothing connecting him to Callie's defect. There was no way I wanted him working on my child. My heart sank in my stomach. It HAD to be Hanley, there was no other choice. Hanley does this specific surgery every single week. I wasn't too sure Lang had ever done it at all. But I would have to wait two months to see Hanley. I called my good friend, Emil, in Arizona very upset and he told me "If the Lord wants Hanley to work on Callie then God will do something" he also said the Lord would let us know beyond a shadow of a doubt what decision to make. I thought to myself that it would have to be a "burning bush" type of experience and not a vague intuition or thought or feeling that may or may not be "coming from the Lord" to make a decision like this. So I left it in God's hands. We had 36 hours for some divine answer as to what to do, and worse, it was the weekend where no one was available to talk to.

Here's where things get interesting. I immediately got online and found an email written by a very nice woman who works with the Chief of Staff at Lucille Packard (the hospital where Dr. Hanley operates). She told me to write a letter and she would put it in the Chief of Staff's hands on Monday. She said she couldn't make any promises, if anyone could push Callie up, it would be him. But the outcome would be up to "Dr. Cohen and God". I was thrilled and wrote the letter. She was an amazingly helpful woman and I am forever grateful to her.

As a fluke, I looked up Dr. Hanley's website and found a general email address for him. I copied the letter I wrote for the Cheif of Staff, tweeked it a little bit, attached two pictures of Callie and sent it off. I figured maybe one of his assistants might open it up a week or two from now. Within a half hour, on Sunday mind you, I received the following email from Dr. Hanley himself, one of top three surgeons in the United States:

Dear Karen and Joe

Thank you for your note, and for the pictures of Callie. I understand your concerns, and respect that you are trying to do everything possible to help your daughter. I spoke with Dr Clabby about your daughter earlier, and just spoke with Dr Park a couple of days ago. Boston is a very good hospital, but you are correct that they do not have expertise in this area. I am currently in Dallas, Texas, at the American Heart Association national meeting, where I am presenting our experience with over 300 patients with callie's problem. No one else has even a fraction of this experience. Our current results with children like Callie is a 98% success rate.

When I spoke with Dr Park, he mentioned that Callie's oxygen saturations had drifted down from the 80's to the 70's. That is actually very typical over the first few months of life, so I was not overly concerned about her. From our large experience we have found that the ideal time to do the one stage repair operation is at 3-5 months. I was able to move her date to January 11th, which is within this range, but I told Dr Park that if Callie's condition was to deteriorate, that we would then treat her as an emergency. This would mean would have to postpone an already scheduled operation in another more stable child, in order to operate on Callie earlier. I am perfectly willing to do that as long as Dr Park and/or Dr Clabby believe that this is necessary.

I believe that Callie's best chances for a successful outcome are here at Stanford.

Frank Hanley MD

There was my burning bush experience in black and white right in front of me. But he then called me directly on the phone about a half hour later. He told me about what Callie's body was doing right now, about he waning sat levels and other physical problems she was experiencing due to this defect. He described everything about what she was going through like it was the back of his hand. He said that he is not concerned about that, she should be alright for a couple of months and that it is in her benefit to wait a little longer to gain strength. The respiratory arrest issues he was concerned about. I told him she has been feeling better since being removed from Reglan and Moducal but I still have to stand to attention eveytime she cries and there is always a chance she can spiral out of control and arrest. He told me that if Callie so much as hiccups, to get her to Egleston and then fly her to Stanford and they will do an emergency repair on her. In the meantime he said "I believe I can help her". He even gave me his cell number. For any of you in the medical field or familiar with the medical field, this is unheard of. Heck, I can't even get in touch with my PCP. He actually was in the middle of his conference when he called me. I guess we got our answer. What a miracle!

It is hard for me to believe that the doctors at Egleston told me repeatedly that she was going to die and this doctor told me that he can give her a 98 percent chance for a successful repair. Please pray Callie have no "episodes" with respiratory distress for the next two months.and that Blue Cross Blue Shield doens't balk at having to cancel the medflight and pay for San Francisco. At this point, I would carry her on my back and walk her there myself. God is faithful! What an amazing Sunday and we got our answer right on time!! Thank you for all the praying you've done for us in this situation.