Scheduling to externalize...

I know I never posted after getting released from the hospital last weekend (sat) but will update now..

I saw Dr,Bragg today and we agreed to proceed w the surgery to externalize a portion of the VP shunt which she will use the same incision we made last week from what she said and I think if I understood correctly will tie off temporarily the distal end of the VP shunt in case this external draining wouldnt work in which case if it didnt work she said she would elect to place the catheter tip back in to the stomach area and although I dont quite get this part (we covered alot of info and I quickly forget my train of thought or dont think of questions commonly till after we've parted,) but she said in that case she would be able to tie the 2 catheters togeheter and pull it through vs having to re-thread the catheter w their tuneller. If the externalization does work we would place the catheter in to the pleural space it seems which is what surrounds the lungs I believe and a pretty easy procedure (I think).  I am not poitive on this but I think we would only be moving the one shunt drainage tip and not both of them although thinking about this now I wish I would have remembered to ask that and will ask her nurse somtime befoe the surgery as I think Lisa would either know or ask Dr.Bragg for me or I could email Dr.Bragg and ask her but likely easier to just as Lisa.

We are trying to work out dates now for this all to occur as she is out of the ofc the week of Thanksgiving (2 wks from now) but also was trying to think of a way she could get this done before then or atleast she externalize and drain the shunt and maybe her partner could do the 2nd surgery to re-install it either in pleural space or if it didnt make a difference back in the stomach. I am not as keen on having her partner do the 2nd procedure just bc I trust and know Dr.Bragg and she knows me so it seems in all likelihood we will probably end up doing this all the week after Thanksgiving. I dislike the idea of feeling this bad the majority of the day for another 2 1/2+ wks but would rather wait to have Dr.Bragg be there. This of course means I would have to re-schedule the hand surgery which is Thurs the 29th which is also not great news as those symptoms are pretty bad but the headaches and resulting issues are worse. Have I said I hate MPS lately?

Next week I do have appts w my Endocrine dr (3mo) and w my Pain Mngmt dr as well as mtng a friend of mine after infusion on mon so probably in all likelihood it would be better to have the shunt surgeries the later part of the month. It would be nice to not need any of the surgeries at all. =/

It seems from what Dr.Bragg was saying today she may be planning for a week altogether for the surgery, draining, and re-install/revision surgery as she was also figuring out even if we did do the surgery next week I would be in-pt over the weekend but could her partner get me out in time for the holiday. I dont want to be in-pt for Thanksgiving. They say timing is everything well I seem to pick the best times of all for just about everything. =/

On a different note my sunday school kids sing in both church services 2 sundays from now and although my co-teacher is the one directing our class and the other classes (I have no music ability what-so-ever organ or directing wise!) id still like to be there so hopefully that will work out too. These are sweet kids and so far has worked out ive not missed any of my sundays for teaching (2 on, 2 off) and hope to keep it that way. :)

I will have to reschedule the Rheumatology Appt in 1 1/2 wks as I have a pre-op (again, such joy) that same day which was originally for the Hand surgery as we couldnt get this last neurosurgery note to cross over (a wk outside the 1 mo timeframe) but it seems it will likely be for the shunt anyways again. I see my Pain Mngmt dr next week and will see what she has to say about seeing Rheumatology anyways since it appears it wont be w the dr she wanted anyways. Guess I am bringing my new PCP in head and feet first as far as how nuts the MPS stuff really is and can be.


One last note my GC and I are setting up an appt w the Geneticist (not his biggest fan) to map out the higher Aldurazyme dose and our 6mo-1yr plan for what we'd like for it to help and how will we measure any potential benefits if it would help. I am unsure when that will be but hoping to start the higher dose soon.

Stay tuned, its never dull although on the medical front I wish it would be!? I am looking fwd to seeing this friend of mine on Monday, although she doesnt have MPS she gets it to an extent and has been dealing w her own chronic issues and right now I could use to vent to someone/talk to someone who understands how frustrating this all does get to be somedays. She is my age and another friend I met when she was doing her school shadowing w one of my providers.

Thanks for stopping by,

Erica