Saturday evening I'd had a long conversation with the cardiologist on call regarding Brandt's pain and sedation medications. We had not noticed any reaction to them after his first surgery, but of course after his second surgery his face swelled up with severe itching, and even increasingly higher doses of what normally sedates babies--well, even adults, actually, he told us--did not calm Brandt or make him sleep. So they were going to try a toradol regimen, which is like a high-powered ibuprofen by IV, for his main pain control. We already knew he responded well to that since ibuprofen was about the only thing that soothed him a little at home. But he is limited to only a few doses of the IV version as it's bad for the stomach after that time frame. We also asked if there were not anything else that could help calm him better but without the allergic reaction, because he would just thrash around in pain, and they would keep giving him more strong sedation. But they indicated it was still necessary to keep him from pulling out the sutures or wound vac...
The doctors had said he could start his feeds earlier than the normal 6 hours after being extubated since he was breathing so well. We know from experience that a hungry belly makes him MAD and I had hoped that having the tube out for a while and getting some food in him would help calm him more than anything. They agreed, but when we came back to meet his night nurse they still hadn't started feeds!?! She said she "didn't have orders" for that, so we got that remedied quickly and she started the tube feed right away, just a small amount since he'd been having some digestion problems. Who wouldn't after all the starts and stops to surgical procedures, feeds, and anesthesia, poor guy. So during the night he was back to his full feed amounts.
But when I talked to his night nurse this morning, she claimed he'd had an OK night, but still needed several doses of fentanyl and versed, which didn't sound like a good night to me. She said maybe they would try to reduce these meds during the day. We got there as quickly as we could to see him, and when I walked in, I could see he was in great distress. He was banging his head against the side of his crib, flailing his little arms, grabbing at his wound vac, and his eyes were rolling wildly. He wouldn't respond at all to my voice or soothing, and his nurse said she'd be right over to update me on the situation. She said despite repeated increases in the sedation meds, his episodes like this had escalated, and that the cardiologist on call had decided to stop all the sedation meds. They were now concluding that he responds the opposite to these meds as most people would respond. Just like most people get drowsy with Benadryl and a few get wild--Brandt has the opposite reaction to the sedation meds. And they really didn't have anything else they could give him. He had ripped out his feeding tube, so they said I could try a bottle for him as soon as he calmed down enough to take it without aspirating.
The rest of the day my Mom, Glenn, and I spent trying to soothe him and watching him struggle to come out of the effect of the medications. They also had said he could continue a little longer with the Toradol, since he'd had a break from it. So we felt his pain was under control, and each hour that passed he gradually improved. He was still fighting sleep, and we knew he had to be exhausted. He gobbled down 6 oz and his face was still red and swollen. One of his eyes was weepy with allergy-type tears and he just looked pathetic. And the ICU staff certainly aren't used to STOPPING meds to help babies calm down...their whole mindset is to keep the patients calm and comfortable, so this treatmen was a little unusual. But as he continued to improve, it was clear this was what he needed.
The rest of the afternoon and evening he refused any further food. Mom and Glenn had to head home with the boys to be back for work, so we said our goodbyes. I was dreading being away from the family again, but grateful Brandt seemed at least headed in the right direction!
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