The last couple of days have not been the best relative to BP, water retention & a high pulse. Whether you're in the hospital or at home, weekends are tough when your sick. It's difficult to connect with your doctor(s) so you end up with the doctor on call, who typically isn't familiar with your case; so for the most part you find yourself just hanging on for Monday morning to connect with your physician.
As parents, we just don't know when we have reached a critical stage that requires immediate attention, or just a set-back that can wait until the next "work day." Everything out of the ordinary is scary, especially when you're dealing with the issues that we are with Alyssa. We feel like we have been hanging off a ledge for several days now. Alyssa's BP has been much higher than it was a week ago, which is most likely due to fluid retention. Yesterday, Alyssa was 12 lbs over what they call her ideal "dry weight." All of this is due to fluid retention. They removed four pounds through her dialysis on Saturday and plan to get five to six more off on Tuesday. But, in the meantime, the excess fluids drive her BP to levels that leave us very concerned. So Monday just can't come soon enough. We'll be meeting with Dr Kouides, Alyssa's hematologist, during her plasmapheresis treatment in the morning. He has been one of our guiding lights during this ordeal, who along with his incredible knowledge, brings a sense of calmness that we have all valued over the past month.
We'll update you after our "reunion" with Dr K.
dd
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