Writing to you all from the PICU yet again. Audrina's cardiologist had lowered the dosages of her heart meds since she was having trouble with urinating - they were getting near toxic high levels and we were seeing all kinds of crazy low heart rates. Then, a few days after cutting the doses in half, she began to have a breakthrough episode of her SVT (Super-Ventricular Tachycardia). We have been lax about her monitoring because we thought the meds were controlling things so nicely. She began having screaming fits Tuesday that were lasting forever and we could not figure out what was causing them. Suddenly my mind drifted to how she used to shriek when her heart rate went of control and I ran upstairs to grab her pulse ox... got it on her and she was at 236. Then went up to 255 and stayed there for a couple of minutes. She looked awful, I will never forget it - eyes glassy and wide open in panic. Normally, she comes right down without an issue after 30 seconds or so, but this went on for minutes. I was on the verge of calling 911 when I finally got her down to 140 and then suddenly she dropped to 90 and that's when I knew it was hospital time - she was not able to keep it stable at all and remained low after that. I held her tightly and dialed Adam with the other hand - told him to rush home (he was on a special Daddy-Daughter 'date' with BK.) My mom met us at the house to get the kids and we took off.
Arrived and had a very long night in the ER - because they lost bloodwork, waited on cardio to call with instructions for like 6 hours. Finally was admitted to PICU and it turns out she simply didn't have enough of her meds in her system anymore. So as soon as its constant in her system and HR stays good we will be released. Looks like no one here will be sorting out the protein in her urine - Cardio says its not cardiac and nephrology says its not kidneys. No one says "well then lets figure it out!" I suppose that leaves me to bug the pediatrician about it some more. We also saw pulmonology twice this week - both our normal pulmo and the one here. We like and respect them both and they both pressed me on how serious it is and how Audrina may be dealing with this instability throughout childhood - they believe its not from being premature and more than likely an underlying severe autonomic dysfunction. She's high risk of sudden death from something called hypoventilation.
*This post was cut short yesterday but I will update more later. ;) Posting as is for chronological records.