Several things have happened over the last few days. It’s funny what seems “big” to me now. 🙂 We celebrate it all.
First of all, Monday afternoon we had another care conference. I asked for clarification regarding the last 10 days of seizure treatment. It was confirmed that we had controlled the clinical seizures (physical symptoms), but that despite trying different variations of 5 different medicines, we had made little to no progress regarding the sub clinical seizures (observable by EEG only).
Given the condition of their brains, it is expected that the seizures will always be hard to control.
In the meantime, the boys had gone from breathing room air and making good progress on bottles, to needing oxygen, taking all feeds by tube, and having zero responsiveness.
They are now in the progress of perking up and gaining alert time again, but in general, there was a notable sedating effect from the medications.
One of the key points of our discussion was acknowledgement that it IS our goal to get these boys HOME. We understand that their time may be limited, and we don’t want to spend more of it in the hospital than we have to if we aren’t truly improving their prognosis.
The scary side of that, is that if we just kept them here…maybe they could live forever. We could keep them in their protective boxes, on tons of machines, and visit them like some piece of museum art.
But we promised them a LIFE, not a hospital stay.
So home is the goal. When they are strong enough. Home as a family of 5. Home with noise, chaos, mismanaged schedules…and germs…and a non-medically trained mommy and daddy.
Before the meeting was over, we discussed a plan moving forward. We’re going to experiment with pulling back on the seizure medications. The goal will be to see if we can increase their alert time, cues, and strength without allowing clinical seizures to come back. In doing so, perhaps they will breathe deeper and get off of oxygen, go back to cueing for feeds and work on bottles, and start achieving some of their newborn milestones.
I went home for one night to spend time with J and K, and have a little bit of normal. J and I agreed that is good for all of us, so I’m going to try to do that one night per week going forward.
The boys and I had the NICU to ourselves on Tuesday and Wednesday. They were also more alert and needy than they had ever been, and I felt more like their mom and caretaker, and less like an observing visitor who needs permission to pick them up.
L is off of Oxygen. (This was before the medication changes.)
L is trying out an open crib! (24 hours in, still maintaining his temp well!)
L has been stirring and more alert during a care or two. He drank 15 ml overnight, and just drank 25 ml for me right before I came home tonight!
N tried room air. He failed…but he lasted a few hours. AND he was barely failing. His levels hovered in the low 90’s, when they want them to hover in the mid 90’s or higher. Last time he dropped in to the low 80’s within minutes. So he was much closer this time!
N cued really well for a feed and was able to try to drink via bottle. He drank 4 ml his first time! Since then he has also drank 15 ml for me!