Friday, July 12, 2013

Neurosurgery fup, records, etc.

I followed up with Dr.Bragg today which went well, she removed both sets of stitches (2 incisions) which is nice because the ones in my thoracic (back) incision where crazy itchy. She commented these looked to be irritated so it is nice to have both sets out!  For whatever reason dissolvable stitches never seem to actually dissolve or atleast not quickly and Dr.Bragg often ends up just removing them.
I asked her if she knew off hand what doses they used when I was in-patient for the pain med (PCA) for past surgeries and so her NP, Sue was looking up this info after re-adjusting my Thoracic shunt and was going to call me either late today or early next week with the info as she wasn't able to just copy/paste and print this. I'll then be able to give this info to my Pain Mngmt dr to give to my Cardiac Surgeons office. Dr.Bragg also in not realizing the valve replacement surgery was so soon (she had thought it was planned for August, I think partially bc I initially posted the wrong info to fb and elsewhere) recommended I fup with her a month after the open heart surgery-valve replacement as we can then begin to plan for removing the thoracic shunt from it's current location in the peritoneum and move it back to the pleural space where it resided up till a month ago - as most who read this know we only moved the catheter due to Dr.Bragg and my Cardiologist having concerns the shunt continuing to drain in to the pleural space while they also would  need to place bilateral chest drains for the valve replacement was a problem waiting to happen and something they wanted to avoid. We also opted to turn down the Thoracic shunt today as Dr.Bragg commented we could always turn it back up if need be next week (I would just have to call and let them know, but seems fine so far) she felt we should try to maximize symptom improvement with the shunts ahead of the valve replacement and so the TPS is now set at 40 while the VP shunt cont's to drain at a setting of 50. Last she gave the 'all clear' to go swimming again, which is great as I wanted to take Zan tomorrow! She had seen pictures I posted last week from Quinn and Lis'  being here from having taken them swimming and commented how she felt it was close enough now to be able to safely go. =)

Otherwise I saw one of the Occupational Therapists at the Hand clinic this afternoon and she just did a few things to help with the scar tissue that is forming around the Hand surgery incision (ultrasound, desensitizing, etc) and I fup w that clinic next Fri + then the following Tues once more before the heart surgery.

Yesterday's Pain Mngmt Appt with Dr.Bratanow went well, other than when I got there as seems to occur every few months (and quite irritating) her Secretary will give me a date and time and then apparently never write the information on their master schedule. Grr!! Dr. B thankfully saw me anyways I think especially bc she knew the heart surgery was coming up and knows this scheduling issues happen  more often than not through no fault of mine. - She (Dr. B.) plans to talk to Dr.Mitchell, the Surgeon about her recommendations. I will talk to Dr.Bragg tomorrow (see above) and try to remember to ask her what exact med regimen she has used in the PCA post-shunt/spine surgeries as this has worked well.

I also saw the Dentist for the 2nd time this week to try and get some dental work done before the heart surgery, the Hygienist (who I could have jumped up and hugged for doing so) said to the Head Dentist today when he was checking my Dental Student's work that he (the dentist) couldn't lay me all the way back as I had CHF (heart failure) and was unable to breathe laying back fully and commented to him that they had been doing their work mainly sitting up. She also made sure the Dentist when checking the work to sign off was aware that no, in fact I couldn't open my mouth any further due to the underlying issues and so they where all working in limited space but making due. Definitely no fun but grateful for people like this Hygienist and the Student-Dentist who are willing to work within the confines needed to get the work done and still try to make it as reasonably comfortable for me as possible. Glad to be almost done w this!

Trying to still sort out specialists sending their records to my PCP (primary dr) as it seems to date the only providers actually sending her notes are the in-network specialists and my Neurosurgeon. The rest are apparently still sending notes to my former PCP? This despite my "new" PCP being listed at all hospitals as the primary dr of record so I am completely confused why this still is occurring and have been asking various specialists to send their recent records to the new PCP so she can review and be up to date on what is going on other than what I tell her. She is very good and does a good job at keeping my records up-to-date so I really want to figure out how to get all of the specialists to send their notes directly to her! Definitely never ending something to always be dealing w or sorting out medical wise!

Last but  not least here in the blog co-written with NORD's RN and posted on the Rare Disease blog.
Blog written with NORD's RN

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