From MckMama's blog:
Our little trooper tolerated massive stretches of SVT for hours and hours upon end before finally hitting the wall in the early hours of the morning today.
We've seen Stellan this bad once before. It's heartbreaking. He's still in SVT and is pale and kind of dusky in color, listless, can't focus on anything or stay awake, has thready pulses and a bit of edema, cold extremities, low blood pressures, is clammy, has a low core body temp and his nurse can't get an underarm temp for him at all right now. My sister is here with us right now and she's holding Stellan.
The experimental drug plan has been kicked to the curb. Dr. B ordered the "new" med that Stellan started on Friday to be discontinued immediately. An iv drip of a beta blocker that Stellan has been on before back in March and April has been started now instead, to try to get Stellan's heart and body out of immediate danger. He's still in SVT and things have started to go downhill quickly as noted by his appearance and symptoms.
As far as what the plan will be if and when the iv beta blocker gets Stellan's SVT under control, time will tell, I guess. For now, it's one baby step at a time for our sweet little baby. This is just so hard for our family, you guys, I am having a hard time explaining it.