I spoke with the neurology nurse practitioner yesterday and got a little more detailed report about the VEEG results.
While Teryn was undergoing this procedure there was a red button that was to be pushed anytime someone saw suspicious activity from her. This could include apnea as well as unusual limb movement or blank staring.
Over the night there were 3 of these events recorded. The first event was apnea alone. The second event was within a few minutes after the first. This event included seizure activity as well as an apnic episode. This total event lasted between 60-70 seconds (not necessairly 60-70 seconds of apnea...just a duration of the breathing issues and brain activity combined). The third event recorded was strictly apnea.
The good news is that there was only one recorded seizure as opposed to several that I was originally told. Also, I was originally told that the apneas and seizures were independent of each other during this test. Based on the timing of the events, this is possibly untrue. The second event very clearly had an apnea event with it.
Strange to say, but this could be a positive thing. Reason being....maybe once the anti seizure meds are regulated on their maintenance dose maybe the apneas will improve. This is my own theory and not one of a doctor. But hey they are just making shots in the dark with some things too.
While Teryn was undergoing this procedure there was a red button that was to be pushed anytime someone saw suspicious activity from her. This could include apnea as well as unusual limb movement or blank staring.
Over the night there were 3 of these events recorded. The first event was apnea alone. The second event was within a few minutes after the first. This event included seizure activity as well as an apnic episode. This total event lasted between 60-70 seconds (not necessairly 60-70 seconds of apnea...just a duration of the breathing issues and brain activity combined). The third event recorded was strictly apnea.
The good news is that there was only one recorded seizure as opposed to several that I was originally told. Also, I was originally told that the apneas and seizures were independent of each other during this test. Based on the timing of the events, this is possibly untrue. The second event very clearly had an apnea event with it.
Strange to say, but this could be a positive thing. Reason being....maybe once the anti seizure meds are regulated on their maintenance dose maybe the apneas will improve. This is my own theory and not one of a doctor. But hey they are just making shots in the dark with some things too.
We don't know specifically what has caused the seizures. It could be any of the neurological issues she has or even the fact that she had a time where she did not have optimal oxygen after birth.
Last night I was here with her to give her a bath and get her settled for the night. She was awake for almost a 2 hour stretch and was completely calm and happy. She loved her bath and didn't fuss a bit. She especially loves having her head rubbed and brushed. It is so cute, her little eyes roll back and get so heavy. Once she was settled in for the night she did not have any desats or apneas. So far today she has only had one minor desat that she corrected on her own. She continues to be on a nasal cannula that is pumping room air just as a precaution since her seizure episode. I am sure she will get to come off of that soon. She is back up to full feeds and therefore does not have the IV hooked up all day anymore. Only 3 times a day for a half hour to receive her antibiotics. Tomorrow should be her last day of antibiotics and hopefully we will be IV free again.
Probably the beginning of next week we should have the procedure to have her gtube advanced which will mean we can take the tube out of her nose. This is a noninvasive procedure and doesn't need a recovery time other than lowering her feeding rate and then increasing gradually to be sure she is tolerating it well.
After this is done all she will have on her are the monitor probes. YAY!!!!!
I am holding up much better today. The initial report of the seizures was pretty tough to handle, especially since James had driven back home and I was here alone. I spend every second I can sitting in the NICU with Teryn since seeing her always makes me happy. I keep telling her about all of you who are loving her from far away. We are still blessed in so many ways. I have a beautiful little girl that I get to see and hold and love everyday. Just that makes me abundantly blessed beyond so many others.
Here are some pictures from when she was hooked up for the VEEG.
When we were going through some things with Angela they said that apneic events could be caused by several things. One being reflux, which you know she has, and another being a seizure. They might definitely be related. Now for Angela she had both obstructive and central apnea, however when we corrected the obstructive with the addition of the cannula, the central stopped. Central and obstructive can be related. Just giving you my two cents, I hope it helps! It's great that she will soon be IV free! She is such a precious baby! I hope things continue to improve for you! We'll keep you in our thoughts and prayers!
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