Tuesday, September 29, 2015

Home sweet Home (Mon)

I got out Monday, haven't really updated much throughout this surgery but it went ok minus the need for the 2nd un-expected revision/surgery Thurs (2 days after the 1st).

I had rescheduled my weekly ERT Infusion to today (Tues) which was the only day the Infusion center had open. As it turns out I got about 1/2 way there, stopped to get a soda (have to have something to look fwd to on the drive ) and my car seemed to be overheating. I love my car but it sure has it's issues! Thankfully after letting it sit for about 30mins and talking to my Dad and Brother separately both felt as long as no dash lights where on/came on and as long as the thermostat (temp gauge I guess) stayed below 1/2 they both thought it would be ok to drive home. So much for infusion I guess? Thankfully though my car was fine, I went over to my brothers (Beaver Dam, about 15mins from where I live, 35ish mins from Hartford) and he looked at it and thinks maybe water just got up in the engine on a certain part (can't remember what he said exactly) but it was raining some this morning so is possible. Needless to say I am just glad nothing seems to be wrong - believe me I am praying it stays that way! Definite perks of having a Dad and Brother who are mechanically inclined but I'd still like to avoid buying new car parts!
Yesterday when I talked to Dr.Bragg before getting out we talked some about this recent surgeries and then about f/up and timing to put back in the 2nd shunt. I see her Monday so am not entirely sure when she would be thinking but I get the impression per what she said sometime in the next few wks after Monday's Appt.
I definitely do not really want to go through another surgery and especially so soon but for the sake of feeling better headache wise may be worth it. In this surgery we'll replace the VP Shunt we had taken out in May's infection/surgeries and I think the plan is to use the same Codman Hakim valve. I am hopeful we can put the regular size one in, which I know is weird, why wouldn't I want the smaller one but it just seemed to work better than the smaller profile one we have in the LP Shunt. Either way will be nice to feel better after that is done!
I knew going in last week I likely wasn't going to leave feeling to great, albeit I WILL say the back discomfort/nerve discomfort is like 50-75% better which is AWESOME! My former Infusion Nurse/Access Team Nurse who drew my INR last week (day prior to surgery) said to me something to the effect of "You know your going in and still likely going to leave not feeling really good" and that was a little unnerving (the thought not her comment) but I also knew there was the good chance Dr.Bragg was open to putting back in the VP Shunt in the not that distant future after last wks surgery.
That thought/hope made it seem more acceptable (which I know is likely an odd thing to say), basically it came down to there was hope for feeling better down the road a bit. It was like the "consistently shitty" was going to be helped and that is hope enough. =)

It isn't horrible and if I had to guess is just when the shunt is draining/working to drain but there is still the very odd almost sharp twinge in the LP Shunt side but all things considered, while annoying it isn't the worst I've dealt w. The side and back incisions do get puffy as CSF seems to accumulate so perhaps it's related to that.

As far as setting goes in last weeks surgery she did set the LP Shunt valve at the bottom (drains the most, setting of 30) which I kind of thought she might do but had forgotten to ask till yesterday.
EP (Heart Rhythm) Appt f/up -
Next wk I see Dr.Kovach, the EP (Heart Rhythm) dr., to review the (approx.) 1 mo point of being on Ivabradine. The thought was if heart rates weren't consistently below a certain bench mark they would double the dose.
Heart rates have been more up than down but atleast they are some improved I think. =) I think the best thing of the med is sitting down I don't get the 'hard to get enough air' feeling as much although stairs often seem harder these days. Hopefully upping the med if that's what my Team decides to do will help that.

Not a lot else going on medical wise which is ok. I see my Pain Mngmt dr. tmrw but nothing to big there, just has been a few mo's and that's when the app worked out for.
Stay tuned :)


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