We just came from rounds and speaking with both the neonatal doctors and the neurologist. It is reassuring to have the main team back and to know that they will be here consistently now.
There is not much specific information to report. The neurologist was doing a review of the monitoring over the last 20 hours and said that based on what he was seeing, there has not been seizure activity. But that still has to be reviewed by the computer and read officially.
We asked about timelines. What has been especially hard for us is the rising and falling of expectations... we have both allowed ourselves to get hopes up for each discussion with the doctors that they might say "we're unhooking him from everything and you can start feeding him and probably take him home tomorrow". That is not going to happen. We have been told to proceed on the assumption that he will be here for at least the next two weeks. Controlling the seizures is great, but as the resident explained to us, it is like tylenol controlling your headache...the more important thing is determining what is causing the seizures. And they just don't know at this point.
He will have an MRI today. The expectation is that that will reveal some answers about his brain and help them to start zeroing in. Our greatest prayer request is for strength and peace and trust in God for us as we find out the results of the MRI. We don't know what time that will happen, but have been assured that it will happen today. He will then be hooked up to the EEG again, so we will still not be able to hold him again today. But we are able to be with him all day and to hold his hand. His blood tests continue to say good things. They significantly increased the does of the anti-seizure drug (yesterday was 17, today it is 42), so he is pretty wiped out. The good in that is that it means he is resting very well. The bad is that there is little response. We still have not seen his eyes open.
They are planning to do tests on several more fronts... a "shotgun at the waterfront approach" as the doctor explained. A geneticist will be visiting at some point and they are going to try to figure out if he might have some problems with his metabolism.
We have come to terms today with the fact that this is not a sprint, but a marathon. Knowing that, we hope, will make it easier for us to pace ourselves and control our expectations. We remain hopeful and very reassured that he is getting great care. We are not at odds with the doctors on anything ( e.g. they want him to have Robyn's breastmilk as soon as possible like we do). We have developed a strong trust in them, which helps us feel more peaceful.
Thank you again for the incredible love and support that we have felt from all of you. While it often brings tears, it means so much to us. Thank you.
With much love,
Robyn, Kevin and Finley
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