I did get released Sunday afternoon, I wasnt feeling any better or worse there than I could feel at home so there was no point in being there. My Sister had my neices 4th Bday Party Sun night and I have to say I just felt tired and not great so felt as if I was watching everything from the periphery. Kind of sucked (feeling so out of it) actually).
It has not been a greatly fantastic week though atleast I am home. I admit I feel kind of depressed at feeling like crap again and stinks that the stupid shunt had to fail when atleast we where having semi-decent results. Atleast I had felt like a human, headaches or not I could live w the way things where prior to last Mon. While I don't feel great I am trying to remain optimistic though that admittedly hasnt been easy as I wake up a 1/2 doz times or more a night (for whatever reason when I have shunt issues it affects my feeling like i have to pee alot at night). I have little motivation to do anything and yet have plenty I should do. I HATE THIS! ='/ Dr.Bragg has said to just call
if I thought I needed to see her before next wk and i've been tempted but will probably just talk to her Secretary when they call w the f/up date. I don't want to need Dr.Bragg! I am pretty sure the shunt isnt going to sort itself out this time, atleast other times when it did i'd feel a little better each day and this time I just feel blah and aweful day after day after day.
Last week seems like a blur, especially Monday night to Weds after surgery. I really remember very little of the ER at BD, the ambulance ride to UW and I don't know that I remember anything really of the UW emergency room or being on the Gen Med floor at UW prior to the shunt revision Weds. I do know the hospital was full so that's why I was initially on a different floor and that the Nurses (apparently) specifically made it a point that I had a room back on the Neurosurg. floor following surgery Weds. I apparently had multiple conversations on fb with friends but don't remember these or anything I may have posted which is sooo weird!
As much as I feel like crap now (and I do, ugh it's aweful), reading evem this is near improssible (seems the stuff that is close up) I feel lucky that as much as I hate being in-pt these Nurses and staff have become like extended family and seem to really like me/want to make my stays a little better. As weird as it is I feel like some in the Neurosurg. floor/Team are more like family (in an extended kind of way) than are some of my own extended family.
Honestly it is a little depressing to feel worse now than I did prior to last Monday night when the shunt really failed. I may not have felt perfect up till Monday night last wk BUT I did feel more human and I felt atleast somewhat better, I felt like things where going fairly well for once! Honestly I feel like the hardest part of shunt issues atleast on a mental level is I feel like I am in a fog and like interaction with other people is much harder.
Hard to explain but I know i've talked about this before here. I don't feel like a very friendly person as it genuinely feels difficult to make small talk. At the same time i'm sure in conversations lasting just a couple mins. I just seem either unfriendly or probably aloof/rude or some people likely don't notice. I feel bad about and hate this and yet it's as if I am in a fog so I am aware of my change in personality but to tired to change it.
Today I just felt like there wasnt anything we where doing in-pt that I couldnt do on my own out-pt. Dr.Bragg when she stopped by before I got out commented something along the line if things didnt improve she wasn't giving up and if needed she felt we had options + we could fiddle more with the shunt function/placement or settings.
I did keep forgetting to ask her what settings the 2 shunts are at now post-last wks surgery so I am not sure if we have any room with settings. She to it seems is hoping due to the sudden and severe nature of this shunt failure that it will just take a few more days for my brain to calm down and settle back to a more normal.
As far as f/up i'll see her next wk (a week out from now) probably on that Thurs 1.5wks from now. If things would worsen or I needed she just said to call sooner. I kept wondering this week given the shunt failure was so sudden and so severe is the TPL Shunt working or working optimally? I guess this is something i'll have to ask Dr.Bragg if I don't feel better. Who knows but hopefully it (TPL Shunt) is!? =/
On a side note Dr.Bragg mentioned yesterday they are interviewing a new Neurosurgeon to join her and her Partner in their Peds Neurosurgery practice, it sounded like someone who has been in practice for some time. She was hoping this person would be open to trying new things and could perhaps help her - who knows but I am grateful she still seems to not be giving up. I think that will always be a fear of mine. I do just wish I could feel better though. =/
Will try to update soon, sorry this has been less than awesome,
Erica
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