L”s EEG was today. Since he’s having more of the sub clinical seizures than N, he was the guinea pig. The goal was to check back in on their brain activity and see if the Topemax made any improvements.
Neurology stopped by this afternoon and confirmed it did help L a little. He’s still having them, but we’re in that difficult dance where we have to determine how much medicine the boys can handle without getting stuck in a lethargic state.
All of their medications were weight adjusted today. In addition, the Topemax dosage was increased a little. AND…they are still really sleepy.
Per today’s discussion, we’ll have to wait a couple of weeks to let their systems fully adjust to the meds. That will allow us to see how the boys are doing with regard to perking back up and getting back on track with things like breathing independently and eating by bottle.
We are working on setting up another care conference on Monday where we can discuss next steps. This will be with the same neurologist we talked with last Thursday, and even during the pregnancy back when we were just talking about all of this in theory. I really want to make sure we keep one person engaged on an ongoing basis so we have some consistency. And she’s the winner.
In other news, the hospital was shooting a video for an upcoming employee celebration. I’m fairly sure they were looking for the two best looking boys in the hospital, so they of course settled on L and N. Both boys were recorded doing some daily routines with the nurse, and in their isolette. I stood close by adjusting blankets, lighting, and trying to disguise cords. Meanwhile no one mentioned to me that my shirt had crept half way up my stomach. I ended up in the video too when they wanted to show parent involvement. Ironically, for the first time in his life, N was wearing a UK hat. So between the UK hat, and the creepy mom in a half shirt and sweat pants…we might be edited out. 🙂
Pop and Nan were in to meet the boys this evening. Nan and N did a lot of snuggling. And she confirmed nothing keeps a baby warm quite like a grandparent.
Big Bro L took one for the team, so he still had his leads on when we left this evening. That meant N got all of the cuddling. But I promised (warned) L we would make up for it tomorrow.
While this photo isn’t his most flattering one, it is very special to me. This is the first time I’ve noticed L actively opening both eyes since the seizure meds started. He blinked them open several times during his 6:00 bottle, and seemed responsive to hearing Pop and I talk.
I see you, L, and I’m not going anywhere. Hang in there.
Sheila Blevins said:
Never mind that creeping shirt – you all look fabulous! Continued prayers.
I love that they are wearing their UK!! Bless you all! You are amazing people!