Today started out with a bang – good mood, ‘Mommy PT’, ate a big breakfast. Then came the plasma exchange. The procedure went well, and Zayne seemed a lot less nervous at the 3rd treatment.
After eating lunch, we went for another round of ‘Mommy PT’, but she wasn’t up for much, so we just walked and did a little stretching. Back in the room, Zayne complained of a head ache, dizzy, feeling poorly, and her heart rate went back up into the high 140s. Also, has some hand tremors which make artwork difficult (this may be due to any of the many meds that are coursing through her little body .
Zayne ended up back in bed and not doing much for the rest of the day. No fever, but Zayne was not feeling so good.
Besides Zayne not feeling well, the heart echo revealed some improvement on the right side of her heart, but no improvement on the left side. So, we had a backward slide, today. I kept bugging the nurse to figure out what was going on, because I was worried about her high heart rate. The doc thought she may be dehydrated from the plasmaphersis, so she got hooked up to IV fluids and encouraged to drink liquids. It is so confusing to Zayne – one day there are severe fluid restrictions, and another day she is getting an IV for fluids. It seems they overshot her fluid removal. No Lasix, tonight.
By the time bedtime rolled around, she was back to herself and wanted to do some ‘Mommy PT’. We couldn’t because it was late and she had to take her meds and receive her last Rabbit treatment (for this cycle?). Hopefully, Tuesday will be a better day.
The CH50 results have not come in, I’ll ask at evening rounds, but the nurse didn’t have results. This is the test that will direct if there is another Eculizumab treatment.
Her milrinone dose was lowered a little bit. I’ll see what is said at rounds, tomorrow. It is difficult to know how she is reacting to the lowered dose, when she spent the day dehydrated.