7/7: An Infection Stops Everything
That trip to the ER got Leo admitted and it looks like he's got a fairly serious infection from/with the venus port called "Gram Negative." They're going to keep him there, possibly for 2 weeks (!) according to Dr. Rhonda Orem, who is an infectious diseases specialist there. In reality, it may only be a few more days, since the culture results should come back tomorrow (Saturday) and they know the specific bacteria name that's trying to make a home and how to treat it. Most likely we will get a nurse to come to our house to administer the antibiotics via IV. In the mean time, not only do they draw blood from the venus port, but also from one of his hands, so the torture continues.
On the other hand, yesterday (Thursday) I got a call from Dr. Szymkowski asking us to come to Houston for an evaluation (no FDA approval yet). We had an appointment on Monday and she suggested we plan on staying for the 3 weeks. So Houston is out for now because their protocol says no infections.
What about the tumor? No radiation and no chemo, what do we do? Dr. Szymkowski says that even if he were undergoing radiation and chemo, they would have stopped that even, so this doesn't seem like just a little cold. But Dr. Chang doesn't want to hear about any of this and honestly believes that traditional treatment is all that Leo needs. Marina spoke to him a few days ago and, in summary, he said that even if we wanted to come back to him, he would not treat/radiate Leo. Today he stopped by the hospital and handed Marina a typed letter on Lutheran General letterhead to that effect. I will scan the letter and post here for everyone's enjoyment. Update 8/31/2006: Click on the following image to see a larger scan of his letter. I have underlined my favorite portions in red:
Marina spent the first night at the hospital (and almost went batty because no one had any answers or their answers were wrong) and I spent last night there. Leo is a real trooper -- they had to draw blood from the venus port, which is a non-event, but also from his left hand. He hardly cried...and only for a few seconds. He's eating well and is still trying to have a little fun, and although his speech has gotten worse over last week, it is actually much better today.
Everything again is in shambles..
On the other hand, yesterday (Thursday) I got a call from Dr. Szymkowski asking us to come to Houston for an evaluation (no FDA approval yet). We had an appointment on Monday and she suggested we plan on staying for the 3 weeks. So Houston is out for now because their protocol says no infections.
What about the tumor? No radiation and no chemo, what do we do? Dr. Szymkowski says that even if he were undergoing radiation and chemo, they would have stopped that even, so this doesn't seem like just a little cold. But Dr. Chang doesn't want to hear about any of this and honestly believes that traditional treatment is all that Leo needs. Marina spoke to him a few days ago and, in summary, he said that even if we wanted to come back to him, he would not treat/radiate Leo. Today he stopped by the hospital and handed Marina a typed letter on Lutheran General letterhead to that effect. I will scan the letter and post here for everyone's enjoyment. Update 8/31/2006: Click on the following image to see a larger scan of his letter. I have underlined my favorite portions in red:
Marina spent the first night at the hospital (and almost went batty because no one had any answers or their answers were wrong) and I spent last night there. Leo is a real trooper -- they had to draw blood from the venus port, which is a non-event, but also from his left hand. He hardly cried...and only for a few seconds. He's eating well and is still trying to have a little fun, and although his speech has gotten worse over last week, it is actually much better today.Everything again is in shambles..
posted by Yury at 3:51 PM
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