Thursday, January 23, 2014

Discharge (Weds), Shunt revisions.

I am soo incredibly tired, I just can't even explain it other than the pressure in my head, my vision being so messy (improves some in the afternoon or the longer I am up) and overall how tired I am altogether is making me feel like I am in a zone. =/ Although it seemed like Dr.Bragg and Sue (her NP) where hesitant when the Resident offered my going home and I wanted to Dr.Bragg did let me out.
The Resident had said this morning it was up to me, how I was feeling if I wanted to go and I figured why not? I wasn't really doing anything here (in-pt) I that I couldn't do at home.. I do feel like crap and so tired (slept roughly 13 hrs over night); I think I may also lay down for a nap this afternoon all that sleep aside.

Dr.Bragg tapped the VP Shunt on Tues and appeared to be flowing ok, a good thing albeit no idea why I feel so crappy. She does still feel time may be our best bet in this case given how much she did in surgery last week and I often tend to have difficult recoveries (slow) after these shunt surgeries. I think this may be b/c Endocrine hormones tend to be all over the place and even w our treating the cortisol deficiency this still has an big impact on post-surgeries.
Dr.Bragg commented how she was thinking of this surgery and how I've been feeling when she was at home last night (Tues night) and things we've done in the past (especially the pseudomeningoceles or CSF filled pocket which is something we always marvel at how well I did when I had those. Pseudomeningoceles are fluid (CSF) filled pockets under the skin that can expand, acting almost like a shunt), many people do poorly with these as they can only drain a small amount of fluid (I guess) but it has always seemed like the more fluid I could drain the better I felt!
She also reinforced as she typically does that there will be other things we can try if I don't improve (symptoms, how I feel) but that she (we both!!) hope a little time will give me better days ahead. She just said she wouldn't let me feel like this for a long period and we'd re-assess at f/up next week. I know (as I've likely written about in the past!) I shouldn't doubt her or that she's going to be there to help me for the long run but I do sometimes (then I feel guilty) though not intentionally. I think a big part of my self doubting stems from all the issues I had w other Neurosurgeon's in the past wanting to help and then bailing out. I am lucky that she is persistent and not easily scared off as it has been 2 1/2 yrs now of our working together. I know it has been an up and down 2 yrs and not perfect but I am very grateful she's hung on. I think it's a feeling only someone else who has had a lot of specific issues and had to work w/a Specialist often ( Very often!) could understand? I don't think I ever feel totally at ease but I do trust her, even if I doubt a lot!

I am back on Coumadin (blood thinner) after having been off of this for nearly 2 wks and having been bridged w heparin injections for several days while Dr.Bragg decided whether she wanted/needed to go back to surgery for my shunts or was she going to keep waiting and watching. The dose just starts back up where I left off almost 2 wks ago.
I talked to Cardiology (NP) earlier Weds regarding being discharged and when to do another INR check for them. They advised Monday, since I will be at ERT (infusion) at their hospital anyways and they kept the Coumadin dose at the prior 6mgs. My level this morning was virtually normal (for someone not taking blood thinners) but the NP felt since we've had a fairly steady pattern on how my levels rise (usually from her tracking record takes 5-7 weekly or bi-weekly lab checks) and she didn't think this time would be any different as I am finished w the IV antibiotics (which can affect a blood thinner level) that where given for the past week in the hospital.

If not before, I will update after the Fup w her next week. This was originally on Monday but due to my receiving ERT every mon (which she/they where able to arrange both weeks while I was in-pt!) in Milw (Children's Hospital) she was ok moving the apt back to next Thurs.
I see the Rehab dr next week for Botox injections which are done mid-spine (around the shunt but not in the immediate area of), the c-spine (neck) and across the shoulders. This is with the new Physical Med Rehab dr. whom I first saw last month and who Dr.Bragg/her Nurse recommended.
Will be a busy week so I am praying I feel some better!
Thanks for stopping by,


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