Kiran had his post op appointment with our local cardiologist today. He looked and sounded great! Pulse ox immediately read him at 100 saturation. He got the last stitch taken out of one of his chest tube sites and got to wean some of his medications.
I stopped his ativan wean – and have given tylenol instead, to help with the transition – at 2 am this morning. He seems to be doing okay, so I am hoping to not have to give him any more doses of that. Dr. M. put his lasix back down to twice a day and thinks we should be able to get him off of that in a few months’ time. Lasix dropping down means the med we were giving to help protect potassium (lasix makes him pee it out) can also be stopped. This means we are on a much more manageable medicine schedule! It also means in six months, he could potentially be down to just his acid reflux med and eye drops! Big dreams!
We were told (again) that we no longer need to have Kiran on the pulse ox machine at home. Kiran has been hooked to the pulse ox every single night since the day we brought him home from the hospital. It is terrifying to actually think about putting him to bed without it. But we have decided tonight is the night. No more parental weaning. Ripping off the bandaid. Big changes!
He has backed off quite a bit the last 24 hours on how much food he has taken orally, but I think he had a mild case of constipation. That seems to have corrected itself this morning, so I am hopeful he will continue to make good progress with eating. We discussed a little bit today about a loose plan to eventually get him off the g-tube, but we will get further direction from our pediatrician and gi doctor.
We also learned today that Dr. Hanley himself called Dr. M to fill him in on the surgery in detail. Dr. M said that never happens. I continue to be incredibly impressed with Dr. Hanley’s level of care along with his incredible experience and skill. We definitely made the right decision taking Kiran to Stanford. He is doing so well with his recovery!