Funny how time flies when you put your head down and try to catch up on a fraction of what you've neglected for the last few weeks. Wait, we're friends by now, so I'll be honest and call a spade a spade - some of these things have been neglected since I moved into The Big House and they still didn't get addressed this weekend, but that's a matter unto itself and NOT the point of this post. The point of this post is to inform you that I may have dropped the ball on letting you know what happened a few days ago on the follow up phone call with Dr. Mayer.
Life just got to rolling along what with Brad Bruckman and Tim Spence coming to town, a trip to Oma's Pumpkin Patch and the much anticipated Fuerte Elementary School Trick or Treat Carnival this weekend so I guess I just filed the information and went along my merry way. You'll have to excuse me if I occasionally forget that there are a hundred or more of you out there checking in and wondering how Phil is doing.
As I mentioned prior, since I live with the guy and we aren't in crisis mode anymore I am attempting to use more of my time to catch up on the multitude of things that have been cast by the wayside. I use the word attempting purposefully because the things that need to get done are, in no particular order: having the cars smog checked and registered, making 3 dentists visits for the kids and I, finding an ophthalmologist for Olivia, an orthodontist for Bennett, and last but certainly not least maintaining my PA certification by completing around 30 more hours of continuing medical education by the end of December. Deep breath.
What I did actually accomplish however as I mindlessly neglected the lot of you were 4 loads of laundry, vacuuming my entire side of the house and emptying all my trash cans, paying all our bills and getting rid of the 20 or so damned stuffed animals that we moved down here even though I KNEW we'd just end up getting rid of them once we got settled. Not the "blow for freedom" (as my dad would say) I was hoping for. We did make it to the pumpkin patch and the Trick or Treat Carnival and Brad and Tim took Phil out for an actual night on the town (read, dinner). The rest I am sorry to say, fell by the wayside once again. Ah well, hope springs eternal.
To be fair, the phone call was somewhat anti-climactic, perhaps that's why I omitted it. Dr. Mayer did in fact increase Phil's Ambisome to five days a week from three so he is now having M-F doses with weekends off. We'll start that today and follow the creatinine levels closely to see how his kidneys tolerate the daily dosing. If all goes well then the iron-binding agent Exjade will be added back in to rob the Mucor of iron. That decision will be made later this week or next.
In looking at an MRI, it's a bit like a Rorschach test. While the overall technical reading may be the same, show it to several physicians and you'll get three slightly different impressions, depending on their specialty. Technically, the edema in the L frontal area is compressing the ventricle on that side and causing a slight L to R shift of the brain. Today, we'll be hearing what Ghosh has to say about the edema and what his impressions are as the neurosurgeon on the case. He may add Mannitol, which is used clinically until a more definitive treatment can be applied. Because Phil cannot have any steroids for the edema, this may be our next step.
Other than that, perhaps watchful waiting will be employed? Perhaps further surgery to insert a catheter to reduce the edema? Like I said, we'll know more soon. And when we know more, you'll know more. Obviously, my to do list isn't going anywhere.
Hmmm and here I never needed an excuse to put my list off -- you are a far better woman than I ; )
ReplyDeleteI am glad to hear you had some normal family and fun time and am glad that Phil got some time out. I will be praying that things continue to go as smoothly as they can given what you are facing.
Kathi
Sally, I did some quick math looking at the list of posts in the Blog Archive and you are on track, for the third month in a row, to be doing an average of one of these every other day. So don't feel bad if you take a few days off because (i) things are blessedly OK-to-good and (ii) you have other stuff you gotta do.
ReplyDeleteIt also occurs to me that it would help if those of us commenters who know something post it, so that you're not the only conduit of information. Esp. if it's amusing. This is second-hand, but I like what it says about Phil's current state (of mind): Phil and Brad and Tim go off to dinner somewhere. The waitress comes over to take drink orders. Brad says "I'm on [medication X]; I can't drink." Tim says "No thanks, I don't drink any more." Phil says "well, I guess that leaves me!" Priceless.
We raise our glasses (in moderation!) to you both.