Productive and validating visit to U of I pediatric cardiology today. Got to see two familiar faces from even before Kiran was born and got to meet some fantastic new people as well. As always, cherry on the top is visiting my aunt who works (in a different area) at the hospital and loves showing her great-nephew around. (Let’s be honest: He is pretty great!)
Lung perfusion scan will be next Friday. As long as these results look good, we have been given a cardiology schedule of … EVERY THREE MONTHS!!! Dr R said this, and I literally said “Wait. Are you sure!?! Three months?!?” (The longest we have ever gone is 6 weeks and that was a brief period). If all is well, we go back to see him in early March. I am still wrapping my head around this.
We have been given the green light to wean Kiran off his furosemide (lasix). We can drop off to one dose a day and watch for any changes (fluid retention – so puffy eyes or distended belly). If that goes well, in about a week, we can stop giving it to him altogether and see how he does! Dr R believes he will do quite well with the wean.
Overall, he looked really good. We didn’t have to do any tests today – no EKG, no x-ray, no echo – Dr R said he would really love to see his heart, but it wouldn’t change anything medically right now. So we will get information from the scan next week, and we will have an echo and ekg in March.
All in all, it has been an emotionally stressful and exhausting couple of weeks as I have furiously collected information, and Arif and I have sorted through it to make this really important decision. I had no idea what I was getting into, when I simply started questioning the anesthesia protocol for the lung perfusion scan put in place by most hospitals around here. I didn’t know advocating for Kiran would ultimately bring us here. But. Here we are.
And today, we rest in the peace that has come, knowing we have – without a doubt – made the right decision for our son.