The title of this about says it all - ive been home since yestterday afternoon and each day is getting better soreness wise and head discomfort wise as well. I am sincerely glad it is not a week ago at this time as without someone telling me things that happened or without reading my blog I have very little memory of the little or even many big things other than sat night and sun where terrible, I ended up in the ER and from there they sent me by ambulance to my neurosurgeon at UW. Monday the Neurologist came by that my nrsgn was working with on my case and afterwards my neurosurgeon and her NPs also stopped by and a few visitors that day as well. I totally dont remember monday night or much of tues other than being very tired/drowsy and being hungry on tues but not being able to eat due to the surgery being later in the afternoon. I know CT scans and Xrays where done both at BDCH and at each done multiple times throughout the week again atUWHC and I can remember a tiny bit of talking to my neurosurgeon and the anesthesiologists before tues nights surgery but I cant remember the conversation with the neurologist or my neurosurgeon or the nurses on monday or at other points tues. Definitely a weird feeling to virtually remember nothing of the week up till finally thurs I remember more when pressures started to even out due to the EVD and my neurosurgeon had an idea of what she would place for a shunt and where. I do remember her saying to me fri when she stopped by the 2nd time before surgery (or it may have been thurs) with 1 of the 2 NPs that she wanted to bring the NP back just so she could see what an amazing difference there was in the 3 or 4 days since the EVD (ventricular drain) and ICP monitors where placed and the reservoir and catheter un-kinked after having been flipped over + tied off. I sincerely hope to not be that sick again for a very long time (forever would be great!) and I think my neurosurgeon, my family and myself most of all where simply amazed by just how disoriented in a way I was from the pressure building up so quickly seemingly as before the shunts atleast seemed to function somewhat/intermittently ie enough to take off some pressure so while I had headaches/pressure and nausea, etc I didnt have continous vomiting and wasnt so drowsy I could barely carry a conversation for 5 mins at many points.
The shunt now is I think doing well and I am adjusting to the new location and different mechanism (route) for relieving the pressure - amazingly so far since the LP shunt has been tied off I also have not had mid-back pain which is awesome as that often went down in to my hands. About 1/2 way through today is when things really seemed to change even better ie pain better controlled with less med and movement doesnt make me feel the sudden changes. The incision in my belly is impossibly uncomfortable to sleep on or touch yet but the shunt catheter route down my R neck and into my chest isnt very unfomcortable which is the area where my neurosurgeon had the most difficulty passing and tunneling the tubing due to my being so thun and so little extra tissue to go through. This is still quite bruised but no hard to move my arms or hard to have clothes against. The sorest is probably my R forehead at the area where the valve sits though really it isnt even the valve area it is the area to the side of that covered in a wet-resistant gauze and stapled to my head that is most uncomfortable probably muit-factorial due to incision and due to the staples in multiple locations. This goes back behind my head and ends up behind my ear where another incision is and also covered in gauze and staples and very uncomfortable to any touch and then down the neck. Just like the Port-a-Cath tubing the shunt is noticeable if your looking and not well hidden but im not so sure the average person would really notice it just is slightly bigger than the Port tubing and also under the skin.
I talked to the nurse today who as always is sweet as pie and we scheduled follow up for a week from thurs when the gauze, staples and sutures will all be removed. In the mean time though the paperwork said not to wash my hair till 5 days post-op I couldnt take it and carefully, mildly washed out my hair as best as I could today as with my thick craziness for hair the dry shampoo does nothing but make it look worse with that much surgery stuff soaked in. I have a few bandanas hich are tie behind my head and when I go out in publicc minus for little things i'll tie one of those in my hair to semi-cover the very notieable gauze bandage on front of head. The other incision and gauze are pretty well covered by my hair. Sleep has been hard as if I lay on the L side propped up I get like an ear ache but the other side is to sore and I cant take laying flat due to breathing issues and some right now the headaches adjusting so I try to sleep propped up as much as possible.
I spent today over at my sisters who lives about 15-20mins away and with my neice and nephew and just chilling out - I skipped ERT which means no infusion for 2 weeks now due to the sudden emergency admit last week so am hoping to maybe be able to make that up later this week but if not i'll go next week. I have to try and work this out for this week with my GC. Otherwise other than our walk/run for APFAN on sat in Greenfield which I and my regional manager are working together to have our materials available and since the proceeds will go to APF. The rest of the week really is quiet so far and so will be plenty of time to recoup and rest. My goal is to stay healthy for as long as possible from these shunt issues (as I think is my neurosurgeon and her nurse as she (dr) made the joking comment to my parents after last fri's. surgery she hopes that we'll be able to restrict seeing each other to 1 appt a year after this. :) She has jokingly made the comment she owes me a summer but in all reality im just grateful for her help and for having had her to champion getting the shunt issues fixed and continuing to believe me throughout so much!
I'll try to update a few other things soon,
Thanks for the prayers and well wishes,
Erica
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