Crawling

From BambiniPt2

Nico is crawling. he went out of the nursery, down the hall and into the living room before he collapsed in a heap. We are not sure if the helmet is weighing him down or if it is just exhausting. Luca is not quite there yet.

This has put added pressure on us to move forward with his surgery. My trip to Dallas was a long two days of flying, and a day with a short meeting sandwiched in the middle. It was a lot of effort for such a short meeting, but when after five minutes with this surgeon, I finally understood what he was all about.

His staff suggested I paid $180 for the "consultation" I suggested that spending $1000 to get there was probably enough. The Doc was to the point so I suppose he was not thrilled at being questioned about his work, but as i explained, I am leaving no stone unturned for such an important procedure. There is really only one shot at getting it right. Any follow surgeries will be to repair the first.

He explained a technical aspect of the procedure he invented (actually a variation of a basic procedure). His procedure is not officially named after him. He recently published his results. He has performed this procedure on 500 consecutive patients in the last ten years. His complication rate was 4%.

He explained that there is a checklist he goes through once the patient is on the table and if all the criteria are present he can proceed with his procedure. If not he has to break it up into two steps, but that is rare.

I brought with me about five pages of text and illustrations photocopied from some medical textbook that our Kaiser Doc had sent us. I showed these to him and asked what he thought. He immediately recognized the procedures and declare that he had tried these years ago and they had an almost 100% complication rate. Then he said "you can quote me on that".

As I asked a few more questions about the procedure he finally declared "this is just really hard to picture until you see it in front of you on the operating table. I studied it in medical school and still didn't get it until I saw it for the first time"

However, I finally did understand why he does what he does, and why he always does it. Initially it was not known if his technique would impact healing, so he began to keep careful notes and do extended follow up with patients to find out. He kept all this data and has published it. In fact the point of publishing the data was to answer that question.

Finally I asked him about the anesthetic. He said they do put a tube down his throat because otherwise the anesthesiologist would have to hold the mask in place for three hours and if he needed to do something else he would not be able to.

This sounded a little like justification for "we do it the way that makes our lives easiest" but he assured me that even though the tube has a fairly severe impact on adults, it is not like that for infants. Hmmmm. I was not convinced. I wondered if this was a case of a "physician minimizing". I decided I needed to speak to an anesthesiologist next.

So with this Doctor we get a procedure that has been tried and tested and the surgeon that invented it and has his reputation is tied to it's success. I don't think you could ask for better. We have to take on faith that the anesthesiology will not mess up his throat. The downside is we have to fly two infants to Dallas and stay for a week or two.


By contrast, we have been waiting for two weeks for a cost estimate from the prestigious UCSF. I finally ran out of patience today and called again to be told the person that handles this is on family leave and the guy that is filling in is "swamped". I wrote to the Doc again and asked as politely as I could if there was anything he could do to help, 20 mins later a PDF estimate arrived in my inbox.

Upon opening it almost had a heart attack. The surgeon fee and anesthesiologist fee were about the same as the Dallas Doc, but the "Facility Fee" was 3x higher. Considering Nico will not be staying overnight and the operation will be three hours, I can see no way to justify this. I replied explaining that this is coming out of our pockets, and asked for something more reasonable. Since this is unlikely, our decision is probably made for us.

This Doctor is very well known and mostly uses the same procedure. He has less investment in the outcome as he does not publish his results (he has attained all the status he needs as a professor, research director and lead surgeon of a prestigious hospital). He claims he uses a simple mask to deliver the anesthetic.

Although this location is more convenient, everything is difficult and there are layers of incompetence at this large, old "facility", and their fees are outrageous. We have to schedule this soon so we have to decide.

I wrote the first "demand letter" to Kaiser this week. I can't wait to see what that yeilds. It was fairly general and made the main point in our argument; that they do one or two of these per year, and the specialists do 150! I saved the complication quote for the next one which will enumerate the list of reasons we are not willing to let them experiment on our son. Sheesh. Most parents would never know until it was too late.