Tuesday, April 17, 2012

Coordination Takes Skill

So, it looks like David will be getting a port on monday.  A PowerPort to be specific.  Fits well with his tech interests, he wanted to know what he could power with it... *eyeroll*  hehe

They said it's a fairly minor procedure but I'll tell ya, coordinating everything for him to get it done is more than a headache.  They wanted him to come in one day for an anesthesia consult then the next day for surgery.  I let them know the circumstances and asked if we could do it all on one day and they figured that out and scheduled everything for thursday.  As I called hospice to coordinate transport we got a call back from the scheduler asking if he's on any aspirin and I said he's on coumadin.  BWEEP BWEEP RED FLAG!  He has to be 4 days off the coumadin before surgery so can't do it on thursday.  Reschedule time! 

This means it will be monday (so he has few days rest before chemo on thursday) and the timing is pretty terrible.  We have to be there at 8:30 for a physical and medical history review, at 9:45 he has anesthesia consult to decide if he'll be put under general or a local or some variation of the two.  He kind of wants to not remember the surgery but a general might be too dangerous for him.  We'll figure out what the best way to do it is.  Then he goes to pre-op at 1:30 so we'll have a few hours of down time.  The forecast says partly sunny so maybe we can venture down to the path by the river.  Surgery will be at 3:30 and should last about an hour and then we can go home.  

So I thought that was all settled, I was down at the hospital picking up the MRI cd so I swung by the surgical office and got the rest of the pre-op paperwork so it won't take as long to sign in.  When I got home we got a call from the Dr Cusati's nurse, Cusati will be installing the port. She wanted to tell us about the "bridge" they were going to do.  I was like um... I have no idea what you're talking about.  Apparently they were planning to "bridge" his meds from coumadin which is long lasting to injections of a blood thinner that is shorter lasting so he could easily go off it the day of surgery.  That would require him going to an infusion center EVERY DAY to get blood drawn and get a shot of blood thinner.  Um yeah, not going to happen.  The convo went something like: 

Me: It's not really feasible to move him every day which is why all these appointments are scheduled for the same day.  There were periods of time when he wasn't on the coumadin, should I check with Dr Sharman to see if maybe he can just go off it for a few days before surgery and then start back up after?  
Her: Well I'd have to check with Dr Cusati to see if that's ok. 
Me: Well does he want him on some kind of blood thinners for surgery? 
Her: NO!
Me: Then why would he care if he just stopped it?  
Her: Well I'll have to check with Dr Cusati. 
Me: How about I just call Dr Sharman in the morning and unless I call you back you can assume that he's off the coumadin as of tomorrow....


I guess all the dr's want the say on what meds a patient takes but we don't feel ok changing his meds without talking to the dr that prescribed them and also letting hospice know.  It's fine, they just aren't coordinating with each other the way we'd like them to so we (I) am making sure that's getting done.  We also have to coordinate the rest of his meds like the steroids which they wouldn't normally have him take around surgery and the morphine which could react with anesthesia.  yay for coordinating things like this.  I should get some school credits if I decide to go to nursing school!  I'm pretty sure I'm already more trained than some of the the CNAs we've encountered! 

So we got the mri results and part of the results of the cervical MRI from the neurologist read as follows.
"There is abnormal expansion and T2 hypersensitivity of the cervical spinal cord extending from the C1 level through the thoracic region.  No abnormal enhancement is seen.  There is mild progression when compared to the previous exam."    

First, I think T2 hypersensitivity is an MRI term and not literally T2 in the spine. Next, I'm not sure exactly what that means as far as where the actual tumor is since there was enhancement up to C2 at the previous exam and that's when he couldn't move his arms.  Now they're saying C1 which is all the way up but some of that enhancement could be minor?  We won't know until the appointment on the 26th. But here's a picture.

I'll try to explain a little of what we see here.  The spine should be fairly obvious, the line of lightness right behind the spine is the spinal cord.  Towards the bottom of the spinal cord on the screen is a little white blob on the right of the spinal cord, we think that's the place where he had the biopsy and laminectomy and the rough looking outer layer is the scar from that surgery so that is T9ish where the biopsy started.  Now that spinal cord area, the light grey behind the spine is supposed to be darker than that and the light color indicates swelling and/or tumor.  When you zoom in on the larger image (I didn't post that so don't get confused about why you can't zoom) you can see that the colors are kind of mottled instead of the solid look of this image.  

It's kind of awesome looking through all the MRI images even though we have no idea what any of them are!  We can guess which is kind of fun too.  

Hopefully tomorrow will be full of coordinated schedules and meds and we're going to ask a hospice nurse to come out to help us coordinate the whole thing.  Fingers crossed!

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