The next follow up appt will continue to be in 1 week with Labs and repeat Echo followed by seeing the Cardiologist again. Otherwise the only change was to the dose of Coumadin as level was somewhat to low, this just went up to 6mgs 2 days a week and 4mgs 5 days a week. This level going up and down isn't that unusual in the beginning as ones body adjusts to the med and blood levels being thinned.
Otherwise i've had to change around a few appts because of these Cardiology fups with seeing Pain Mngmt dr next week and then Neurosurgery the following week. We have to wait 8-12 weeks to replace the Thoracic shunt back in to the pleural space but Dr.Bragg had wanted a fup appt about a month after I last saw her or when I was feeling well enough from the heart surgery. I think one she may want to check the shunt settings (?) and 2 I imagine we'll begin to look at placing the shunt back ie a timeframe and plan which I imagine will be sometime in Oct. though not certain. Otherwise just kind of bored and looking fwd to being able to drive again!!!!
Below I've posted a summary letter I received from the Anesthesiologist at CHW who did the heart surgery and the TEE as she emailed me this the other day as a means for future new providers/surgeries to be aware of what they will be dealing with. I only rarely post this kind of thing but have been thinking about this and really think it is a good example of something MPS Families/Adults might want to consider requesting from their Anesthesiologist as it can be helpful, is well laid out and explains all airway issues this dr ran in to very well. As I think I posted in one of the previous updates this dr commented to me how un-helpful the actual Anesthesiol. notes from UW where in preparing her for what she would see and so she asked me if writing something like this would be helpful in order for future, new drs to not minimize the issues ahead of time. I will leave the providers full name off the end.
August 3, 2013