Saturday, November 12, 2011

Good News, Good thoguhts

It hasnt actually been to busy of a week - not real low key but not real busy either and for once I actually managed to sleep in several days - this is a good sign as usually I wake up exhausted but in no way, shape or form can get myself to fall back asleep. I feel more like a human being - a human being with some achy body parts but human no less! The 2 mornings I visited my nephew and niece I think I actually had more energy to play with them and making conversation wasnt like talking through glue which also is nice. (talking through glue would be when your brain is so foggy and tired and so you can make conversation in your head but to much effort to get it out). :)  The leg spasms and low back pain + vision continue to persist and nightime has gotten a little better but is often made worse by the cardiac breathing issues but these to I think will iron out and in time will heal - hopefully not alot of time though! :)

I had sent a quick email to my neurosurgeon last night that things where going good as she and her nurses always ask to be kept up to date and honestly email is just the easiest way sometimes - this way no one has to answer a phone or listen to a voice mail and is at everyones convenience. I havent heard anything  minus on monday several hours after the shunt tap about the culture (which was negative then-see previous entry) and so asssumed it was negative which I was extremel;y happy about - if there is one thing i'd like to avoid it is the hospital (in-patient) for a good long while. I like my dr and her staff and the nurses but as we joked monday would rather not see them! :) She just emailed back this morning letting me know about a different question I had last week and she would respond soon + to keep her/them updated.   .. I often wonder how do other people/families keep their multitude of providers up to date or on the same page medical wise regarding whats going on? I think it's an important piece of a patients puzzle but since it is no easy feat I am curious!? For myself my core providers and I do a group email when there is a surgery or some unusual test result going on - this usually doesnt amount to often w/sending an email (and any one of them will respond if they have a particular piece of input) except lately because of the surgeries and so much going on often time unexpectedly. And in this case I just havent updated as often when there is surgeries because it just seems like over-kill and the same basic info just different reason. So then when I do see a provider they will ask why ive not updated and want to know whats going on. I like keeping em on their toes. ;) (just kidding)  One of the hospital systems I am at where a majority of my core providers are at has a electronic system called 'mychart' which can be used to contact providers but doesnt allow for sending a message to more than 1 provider and since a couple of my providers are outside this system ive always said i'll either send one email to the group or otherwise wouldnt do any updates and they all would be on very different pages (because it is next to impossible to get commincation to happen w/this group and getting records sent from one doctor to 4 or 5 or 6 of them is also not likely to happen and I dont plan to be a record ferrier.)  So anyways with this reminder we usually end up back at these emails and it works for the most part and equals less wasted time at appts + all have agreed they'd like the updates so it is purely their choice what they do with them. 

Tomorrow we are headed to Circus World in Baraboo - should be fun and interesting - several of us in my family have read many of the old autobiographies about the first circus's as well as how things have changed safety wise then vs now and so should be a good time.  I'll upload some pictures some time in the week ahead.

God Bless - Take care,


1 comment:

  1. Erica,

    I'm very glad that you're feeling better. I hope the leg pain and breathing issues resolve soon!!

    Good question about keeping providers up to date. We work with providers from three hospitals/offices. I always ask for a written visit summary for my own recall and files. I'll often email or fax that to another provider. Also, Ethan's PCP has assigned a nurse care manager, whose job is to keep everything straight and make sure that all of the recommended evaluations are done on schedule. We're very new to this PCP, but the case manager has been fantastic tracking down records from Ethan's prior docs and from our local hospital.