Friday, June 5, 2009

where do we go from here?

Dad and I plan to be at the hospital at 8AM on Saturday morning. By then, Mom will have been done with her MRI, and there's the slim possibility that someone will have had the time to look the MRI results over, and will be able to talk with us about them.

We're trusting the hospital staffers, who told us that Mom would likely be discharged on Saturday. There's always a chance that this won't be the case. As happened last time, the docs might feel that Mom's cultures* have come back positive for something, or they might discover that Mom has developed new symptoms, etc., necessitating a delay.

The InfuScience people (the ones managing the daptomycin regimen) have told me that they're flexible: if Mom has to stay an extra day at the hospital, they can schedule around her. Ideally, what will happen is that Mom will have one dose of the dapto before leaving the hospital on Saturday; not long after, she'll be discharged. We'll receive a call from an InfuScience rep later in the day, and will be visited by an InfuScience nurse-- just as happened last time when we started the vancomycin regimen-- on Sunday. Since we now know how to administer doses through Mom's PICC line, there's no need for another training session. The only major change is that the dapto will be administered only once per day, and will take only 30-60 minutes to empty into the bloodstream, as opposed to three hours. Blood samples will be taken once a week to determine how Mom is responding to the dapto.

Beyond Sunday... I suppose the main goals will be to (1) understand and attempt to eliminate the source of Mom's aphasia and cognitive impairment (the key to this is the latest MRI, which ought to tell us what's actually going on in Mom's head), (2) get her safely through the daptomycin regimen and back onto the chemo- and radiotherapy schedule, and (3) get her bone flap replaced with synthetic bone once the dapto regimen is finished in the next 6 or so weeks.

Beyond that, we'll be looking to get Mom through her 6-week chemo- and radiotherapy calendar. At the same time, because her surgical site will have been opened a third time for the new bone flap, we will once again have to be mindful of Mom's healing, taking pains to guard against even the most minor infection.

None of this will be easy, and the burden falls mostly on Mom, who at this point might not even fully understand the challenges that await her. I know it's my own nightmare: to be faced with a dire situation, but to be unable to do anything about it because I don't even realize how dire it is.

NB: If my narrative often sounds more like a dry recitation of facts than an attempt to weave an interesting story, that's partly because I'm using the blog as a sort of note pad for my own benefit. It may be necessary, at some point, to present a doctor with a chronicle of events. Instead of trusting myself to keep the story straight in my head-- which will never happen-- leaving this testimony in the semi-permanent medium of cybertext means that I can retrieve data at will, im'sh'al-Lah. Or in this case, im'sh'al-Google.

*The most recent set of cultures were to be held for 48 hours.


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