Day 5 in-patient, day 3 post-op - ICP monitor removed earlier this morning - I do NOT recommend having staples placed while awake - holy sh*t did it hurt and already in a frustrated mood makes it worse. Neurosurgeon wants to see me later this week and in mean time she is talking to several more people including her Nrsgry chiefs from Primary Children's-Utah where she trained... Wants to see what their thoughts are on the next best step if H/A's not improved by fup this week. She is concerned the reservoir and lumbar catheter are not working as reservoir cont's to not be useable to tap CSF fluid off. Head feels like I have a giant helmet sitting on it top to bottom. We'll talk at fup later this week and beat out a next plan. She'd like to try atleast a different lower resistance valve before scrapping LP and moving to a VP shunt. Not frustrated at nrsgn or anyone in particular just frustrated at situation and wanting to feel better - to get to the place we where in May/June.
I'll finish this post later today or tomorrow but please say a prayer we find a answer soon - that I can find peace in all this and that my Neurosurgeon is able to get some great ideas from those neurosurgeons she trained under and whom she works with. I trust her and feel she is trying her best and not giving up I think it's more that I feel so crappy and am trying to find a way to come to peace with what this all is. I know God is a good God and i'd never question his intestions but some days admittedly it is hard to see what possibly I could learn from these up and down trials.
Will finish later,
Erica
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