We are on week 10 of my 24 weeker’s NICU stay. Her course has been complicated by a difficult resuscitation at birth requiring 26 minutes of chest compressions, and then seizures starting a week after her birth.
Recently, the team came to the conclusion that her spasms are not seizures, but rather myoclonic jerk. They’ve been messing around with her medications for weeks now trying to get the right balance to stop the spasms but not sedate her too much. Most recently, they’ve decided to wean her phenobarbital and keppra and just keep her on klonopin. This week has been rough with all the changes and while her spasms were controlled for several weeks in a row, they’ve been back.
Another change this week was that she has a new doctor (new to us). We’re at a teaching hospital and the neonatologists take turns on the teaching rotation. I thought we’d seen them all by now, but for the past 7 days we’ve had Dr V for the first time. Last week, another doctor was preparing her for extubation. This week, V says that he will not extubate because she doesn’t have a gag reflex. This was the first we ever heard of this and we are so confused. She’s had extubation trials before and no one ever mentioned it. I can’t find a ton of information on absent gag reflex in preemies, so if anyone has experience with this I’d love to hear about it. From my google searches, it seems that using gag as the sole criteria in extubation is outdated, and that gag is absent in up to 1/3 of people. I don’t know what to think.
All the things this doctor says he’s looking for and not seeing, we have seen so many times and have pictures and videos of! He says she doesn’t have spontaneous movement, and I say she moves her hands to her mouth all the time. He says “maybe her hands end up there.” ?!?!?
Today he called my husband and I in after we asked too many questions at bedside. He said she’d likely need a trach and have “very poor” neuro outcomes. She may not know who we are or have meaningful interaction with us. She may not walk, talk, or eat on her own. He said we could also consider withdrawing care.
I think I’m partly venting but I’m also looking for success stories or advice… to us it seems impossible to consider letting her go. She DOES interact with us already! She tracks with her eyes when she hears me talk, she rubs her head around when I hold her skin to skin, and we see her react to all sorts of stimuli when she’s not so heavily sedated. I feel crazy. Like I’m being gaslit. What have you done if you’ve ever had “the talk?”
Recently, the team came to the conclusion that her spasms are not seizures, but rather myoclonic jerk. They’ve been messing around with her medications for weeks now trying to get the right balance to stop the spasms but not sedate her too much. Most recently, they’ve decided to wean her phenobarbital and keppra and just keep her on klonopin. This week has been rough with all the changes and while her spasms were controlled for several weeks in a row, they’ve been back.
Another change this week was that she has a new doctor (new to us). We’re at a teaching hospital and the neonatologists take turns on the teaching rotation. I thought we’d seen them all by now, but for the past 7 days we’ve had Dr V for the first time. Last week, another doctor was preparing her for extubation. This week, V says that he will not extubate because she doesn’t have a gag reflex. This was the first we ever heard of this and we are so confused. She’s had extubation trials before and no one ever mentioned it. I can’t find a ton of information on absent gag reflex in preemies, so if anyone has experience with this I’d love to hear about it. From my google searches, it seems that using gag as the sole criteria in extubation is outdated, and that gag is absent in up to 1/3 of people. I don’t know what to think.
All the things this doctor says he’s looking for and not seeing, we have seen so many times and have pictures and videos of! He says she doesn’t have spontaneous movement, and I say she moves her hands to her mouth all the time. He says “maybe her hands end up there.” ?!?!?
Today he called my husband and I in after we asked too many questions at bedside. He said she’d likely need a trach and have “very poor” neuro outcomes. She may not know who we are or have meaningful interaction with us. She may not walk, talk, or eat on her own. He said we could also consider withdrawing care.
I think I’m partly venting but I’m also looking for success stories or advice… to us it seems impossible to consider letting her go. She DOES interact with us already! She tracks with her eyes when she hears me talk, she rubs her head around when I hold her skin to skin, and we see her react to all sorts of stimuli when she’s not so heavily sedated. I feel crazy. Like I’m being gaslit. What have you done if you’ve ever had “the talk?”
We asked the social worker today if he could be removed from her case and she said it’s not a problem.