Not knowing, complex decisions, Care

Dr.Bragg was in a really long surgery (well in to the night) so I didn't see/talk to her at all today but her NP stopped by this afternoon and we talked for quite a bit about this all similar really to the conversation I had w her other NP yesterday about giving each option a trial period which was something Dr.Bragg talked about on the phone on Mon when she called me (ie if this smaller surgery to remove the 2nd valve didn't work as we hope she'd like to give it a week or two before we did anything else.) and making sure we don't do to many things at once and if something does help not know what it was that helped. Its a good plan to have and I appreciate Dr.Bragg being tentative just need to remind myself one day at a time is better and even though I desperately want to feel better I need to be patient.

I was a little confused talking to Sue about getting out of here as on one hand she said if Dr.Bragg where to decide to do something early next week (seems un-likely) it would be better for me to stay in-patient but then she also said she wasn't sure what Dr.Bragg would want ie my getting out/care and it was probably be better to talk to her when she came around (Sat morning I think) and make sure she thinks the ultrasound was ok (we never heard anything about it from Radiology) and see what her thoughts are ie cont to wait and see or something else.

Admittedly as I've talked about in the past the hardest thing I have always struggled with regarding the medical stuff is simply not knowing a plan or even more so not having a (if even just) tentative timeline for when things might occur. I am the type of person who does well w plans, information and knowledge of when things might happen or what we/my draw are thinking and might consider trying. I think part of that is knowing that the provider(s) care (which I know Dr.Bragg's team does) and even more so being able to arm yourself ahead of time, I suppose to give yourself a distraction and feel like I am doing something (I don't know this one) for my care. Again about the best I can figure to explain my quirks...

I am hoping to be able to talk to Dr.Bragg for a few mind in the morning and see if her thoughts follow along what she was thinking Thursday and if she will let me go home as well regardless if we're waiting and watching (my first guess what she'll chose), trying one of the things previously talked about or?? I always feel more settled when I know a little of her ideas no matter the situation. Thankfully she is patient and seems to like to share her thoughts or possible ideas.

I in all this as usual just desperately want these headaches to GO AWAY! For good! It was a semi-rough day emotionally on top of the physical headache symptoms that very ebb and flow. I try to not focus on the un-knowns to much but today and even yesterday was failing semi-miserably at not having control and not knowing + even the worry am I going to spend the rest of ny life feeling this crummy so much of the time..(obviousmy none of us could answer that anyways as it is ultimately in God's hands). This afternoon my sis happened to call and I vented some to her as well some good friends in the MPS community left sweet messages in text and fb messages trying to cheer me up as they know the roller coaster ups and downs and how hard it is in not having simple answers or easy fixes/solutions.

I am grateful for those friends many whom are parents of MPS kiddos not actual Adults w MPS and for family who cares even though they don't always really get the actual frustration. (There is simply know way one can understand unless you've been in endless decision making, coordinating and day to day-ness of a chronic, complex and very time consuming issues like MPS care.) But my family is still there and tries and for them I am grateful, very grateful!

Thanks for stopping by,

Erica

Revision #16, 2nd Valve removal, Wait and Watch; test(s), Ideas.

Today has been kind of  long day but hopefully tomrrow i'll feel even some better. Pretty much we wait and see if the CSF stabilizes now between the 2 shunts. I was talking to them about (as has  been a past fear too) that I do worry about this being on-going for the rest of my life and not feeling good so much of the time w small parts of the day I feel better. Thankfully Emily, Sue (NPs), Lisa (Nurse) and Dr.Bragg are so easy to talk to  albeit I dislike really talkin to anyone about how I feel. Atleast they care though.

Dr.Bragg's NP told me one of the things they have done over the past few days is talk to her partner Neurosurgeon and he feels as has been a discussion point in the past that this is related to a compliance issue and will take lots of
 "tinkering" to find the right, best set-up for my body and CSF pressures/flow. We know the 2 shunts compliment each other and have helped keep each shunt from malfunctioning or atleast so often its just a matter of why is it no where near as well as the external drains? Who knows. =/ They did

They are going to do an ultrasound (vs a CT scan which I would have to drink contrast and since I havent been able to keep down alot of fluid (on IV fluids yet) and have no appetite (have eaten very little food) so the ultrasound is the simple means to get imaging although will take a bit longer tomorrow than a CT. This will give them a way to non-invasively look at where the distal ends of the 2 shunts are draining in to and make sure there is no CSF that should be absorbing in to the peritoneum that is just sitting or collecting causing issues. If there is no visible fluid collections it doesnt neccessarily mean there is no absorption issue this would just be the 'easy' way a not well absorbing CSF/shunt would present as. There are apparently multiple ways mal-absorption issues could occur w shunts and drainage problems. I cant quite remember that part of the conversation to well. I think Dr.Bragg said there was a chance they would go back in and explore the stomach but I honestly dont remember this part of the conversation well and am sure we will talk more after the ultrasound.  I am unsure when I will get discharged but suppose it depends on being able to keep down enough fluid and food. I am hoping to get out.

If we did decide to do an externalization of the shunt(s) we would likely take the VP shunt and disconnect it similar to w this valve removal surgery and externalize the shunt at the R upper chest area an then drain from there. I am unsure if we would do an open (free flow vs controlled)  drain (from the shunt) or if we would try different regulated pressures to see what amount of fluid worked best.  If Dr.Bragg did end up moving the distal end of the shunt she said she wouldnt put it in the heart due to the significant cardiac issues and instead would likely drain it in to the chest/pleural area I think she mentioned when we talked earlier today. Initially she had considered maybe the atrial part of the heart could be a drainage point but my Cardiologist was against that due to all the cardiac issues  and already having a Port (access device) in place.  She was more than great about that not being an option to consider.

I should know a little more tomorrow.
Thanks for stopping by,

Erica