Friday, July 22, 2011

Neurosurgery appt, shunt tap, UW/AFCH Pediatric Pain meeting

So I was at a meeting yesterday for what I do with the American Pain Foundation at UW after my appt with neurogery (i'll update on that in a bit) and we where talking about this meeting we are pllanning around Pediatric Pain and education. (myself, my regional APF manager and Peds + Adult Pain Coords at UW/AFCH). So i'll talk about the meeting later to but afterwards we where talking about surgery and pain management and meeting together to cont planning this meeting either at the hospital post-surgery or a few weeks a few weeks after and one of the 3 asked something about if I felt i'd be up to meeting after yet another surgery? I made a comment that after shunt revisions you actually usually feel really good bc you have gone from the this high pressure setting back to a normal functioning ICP level and the only thing is post-op surgical pain to contend with. (not realizing the irony of my just made statement and who I am sitting with). Both Pain Coords who I have gotten to know fairly well stopped and just looked at me and started laughing a little as in 'so thats how bad our post-op pain care really is - tell it like it is, Erica'.(both joking). I not realizing how ironic my statement was at first had to laugh bc when you stop and think about it these folks I work with for APF and the same people helping to manage my pain care afterwards (though not on my official pain mngmt team). I had to reverse a little and explain my comment as while the pain care is actually very well and all where really receptive compared to some hospitals ive had  surgery at, at the same time there are some facets of discomfort mainly due to MPS that cant always be controlled by pain care. I think we all get in the habit  of thinking all pain will be 100% controlle (atleast alot of patients) but realy it isnt going to happen msot of hte time  or atleast  I dont think it ill/does. Instead and I think this is especially true with MPS is I think the most bothersome forms of pain can be treate ie acute post-operative pain, chronic muscular/neuropathic or bone pain but the little things from being post op in MPS may not be 'fixeable' such as discomfort from being in bed for 24 hours and unable to turn yourself without a nurse ot two to log roll you or discomfort from being in an unfamiliar bed an less room to shift around. Discomfort f rom less areas to comfortably lay on such as surgery being on your back and sid so you may only be able to ocmfortably lay on your opposite side which then puts pressure on your hips. Some of these things can be helped by proper positioning, using pillows, having the nurse help change position but in the end not all of this discomfort is going to be 'treatable' in my opinion 100% because it may just come down to needing to get up out of bed when the doctor will let you nd move around, stretch the joints and get out of just one or two positions for atleast brief periods of time. But this is just my opinion. :) 

As for the meeting we are planning this will be for medical providers in the morning with speakers educating on how to properly assess pediatric pain in the verbal and non-verbal child, how to delineate from acute to chronic pain and how to know when it has gone from acute to chronic pain. Our  afternoon session while providers iwll be welcome to stay will be based towards helping families and advocates also understand Pediatric pain, how to properly treat acute pain (post-op and from injuries) as well as how to understand what chronic pain is and again when has it gone from acute to chronic. We really want to help families understand that tylenol is nt always an appropruate post-operative analgesic and that families should be asking their doctors for better post-op care for their children to facilitate better overall healing as well as especially in patients who've had chronic surgeries that longer post-op pain treatment is often needed and is OK!

I have to get going so will update on the neurosurgery appt a bit later today if im still standing upright that is! Hopefully get better sleep tonight a busy but fun weekend ahead!! Will also update on the urology stuff and some appts I made with my PCP around this.


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