Wednesday, May 7, 2008


This will be a difficult post.

Arrived at ID for an appointment with DrIV#2. The x-rays were available and we got into a room quickly, but had to wait.

He came in and had the x-rays in hand. He looked at them and said, that it was very bad. I said I had seen them and thought it was difficult to see where the problem was. We began to talk about the future and what our options were.

[warning signals started going off in both of us]

He asked again if we had talked to a surgeon. We talked again about DrSur's options. He wanted to consider where to go from here. We talked about being against the amputation. And then, in a very round-about way, he said, it was inevitable.


WHAT? He suggested that our current course of treatment was just delaying the inevitable and that we needed to consider the amputation.

We were both VERY upset. He took me out to show me the x-rays in the hall on a light board. He put up the x-ray from 3/26 and the one from Monday side by side. I pointed out the recent one was not a good xray because of the distortion on the back of the heel. Then he pointed out the outline of the bone.

OH SHIT. It was not distortion. The heel bone looks like it exploded. Where in 3/26 there was a small (raisin sized) bright spot on a well defined bone (pointing at 7 o'clock), more than half the bone looked exploded to 3 or 4 times the size, diffuse edge and pointing at 9 o'clock. Devastating.

We returned to the room with Victoria who was crying.

I will not be able to recreate a conversation that lasted almost 90 minutes, but I flat out accused him (and his staff) of failing in their effort to contain the infection. We talked about a number of options, but in the end he had two specific things to say:

1. This infection will, in the end, cost Victoria her foot. We might get it healed, but the infection will ALWAYS be in the bone just waiting for another opportunity. He agreed we may have a 15-20% chance of getting it healed, but the infection will never be 'cured'. He repeated, several times, that a 15% chance of healing, means a 85% of failure. We repeated that amputation was a 100% chance of failure.

2. This infection will, in the end, kill Victoria. It might take a long time, but probably within the next 10 years, she will die and this infection will be the point we will look back to as the first fight in the war.

He will do everything he can to give us the best chance of beating the odds, but we need to be realistic. He wants us to deal with the reality that Victoria's foot will be amputated at some point. At best, we are giving her some more time.

I took those comments and inferences to mean he was just biding time, but he wanted us to know that was not his goal. He wants Victoria to be healed, but the nature of the beast is that it will never be cured. At some point in time, she will get another infection or this one will flare up again.

During this time, IN came in and gave Victoria her infusion. He gave us some time to talk while he saw someone else for a short time. When he came back, he said he was going to review the cultures and Victoria's numbers and come up with a oral antibiotic treatment that will, hopefully, be as good, or better than the current IV treatment. This is to help reduce our costs - which got us going on the idea that we didn't want cheap, we wanted the best. He argued that was his goal and that he would not sacrifice Victoria's care in any way because of cost.

For the moment, we will continue with the IV for another 2 weeks and get another x-ray. If things hold the way they are, great.

Understand, the issue for me is the trend line. It appears, for now, that the infection and wound are not getting worse, they are stable, they will never be cured. As long as the trend line down has been broken, I am happy (ier).

We left at 5:30. The building was deserted (it closes at 5) and we both cried most of the way home.

We picked up dinner. CJ is out for the evening fishing with Sue. Right now, we are both calm, but this is not over.


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