Sorry ive not updated since late last week - I did get discharged on thurs w/quite the discharge process once again - it's gotten where my Dad just works the entire day because we know it rarely goes fast but this one made even the last one in Dec seem somewhat smoother! The big issue wasnt my neurosurgeon signing the papers or her NP stopping by in the afternoon (to fill out a script and we ended up chatting some in the hall) or even Pharmacy that all went well but because my morning nurse got done early and someone else took over but never came by to de-access my Port. I finally got a nurse to come by (98% of the time I get the same nurses now but was a different one ive not met who took over) and anyways she didnt know how to take out a Port needle (flush with saline, make sure there's a blood return, and then flush with 5cc 100u heparin to prevent any clots from forming till I used the port today (ERT infusion). So once I walked them through this all then they had to order up heparin which took another while and needless was a long day! My neurosurgeon originally came by around 11:00 and we didnt get out till around 7 - I slept from almost the moment we got in the car all the way back to my parents and then fell back asleep about 11 thurs night till 10 the next morning once I got back to my apt (I leave my car at my parents before surgeries and then drive home from there).
Headaches remain about 50/50 with when they are there affecting vision and nausea and just not great but when the pressure is not there I really do feel great - very odd. I fup on thurs. though no stitches as the only incision is dissolveable. Ironically already a few weeks ago I had been moving around other things on my schedule so I could have atleast thurs morning free (this was before surgery was scheduled/knew surgery was going to be done again) so I could go to my nephews 3 mo autism-ABA (routine) eval - I didnt go to the last one due to conflict in schedule so was looking fwd to this - Sara and I usually get lunch on the way back and is a nice way to hear whats going on with Z progress wise though I am at his house enough when the head therapist is there. One of these times i'll be able to have an open schedule to go with again. :)
**Add in note: The increased lasix dose seems to actually be helping quite a bit with breathing (to reduce load pressures on the heart and lungs secondary to the severe atrial enlargement and aortic/mitral valve issues. - Last night I ended up taking some lasix late in the evening (I take a dose before ERT and also after ERT but for the past 2 weeks have been on a doubled dose of lasix as well) (about 8) which of course meant going to the bathroom till early morning (secnd night of being up till 2-2:30), but this significantly helps the breathing issues. My Cardiologist is holding off on increasing the cardizem (diltiazem long acting) dose until ive recovered from this shunt surgery - I think he just wants to make sure the increased heart rate and rhythms arent related to the shunt and give my body time to heal before adding in something else as well. I have a sleep study the end of Febr. (could have done it thurs but quite a bit going on this week already). and so suspect perhaps he may wait until this study is done or atleast for a few weeks if we do increase this med dose.
Thats about it for now - will try to update again soon,
Erica
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