It's 8:51 and it has been a long day. I get to sleep until 3:00 before my shift starts to I am going to stick to the facts here. Trent is with Maggie now and he has his hands full so our hope is to update everyone at the same time here.
There are 3 running theories for Maggie that they are trying to rule out:
1. She is creating clots from somewhere or because of a condition
2. She has vasculitis for some reason
Echo- there is no sign of clots on the echo. This is good and means that the clots are not coming from her heart.
MRI, MRA, MRV-
*There are no obvious signs of vasculitis but this is not the gold standard for this diagnosis.
*No visible clots
*Increased swelling around the original bleeds that are now displacing her brain
*The clot at her Thalamus that they originally thought was old (I didn't agree with this because we had zero symptoms) shows the biggest increase in swelling suggesting it is not old. Neuroradiology believes this may be an infection because of a band of color surrounding the spot. This was passed to Infectious Disease and they disagree.
Blood cultures- Aren't growing anything
Hematology- This is not all in yet but everything that has come back is negative so far.
On the scans she is getting worse but no one knows why or how to prevent it. The interventions that are left are dangerous and no one feels she is stable enough to risk them. She is basically a ticking time bomb is what it feels like.
She is not moving her left arm and leg as much the last 2 days but this could be because of increased swelling and an arterial line in her left leg making it painful to do so. It could also be due to swelling in her brain.
She is speaking more and opening her eyes more regularly. Trent just texted me that she is even talking in her sleep right now.
She cannot see out of her right field of vision and will not track that way.
She is not as combative and I feel we are able to control some of her pain better with positioning and meds now and this is helping her overall state.
She is eating well and was even saying "more" tonight like she used to do.
How Are We?:
We are discouraged by the findings and lack of findings. We feel defeated this evening. We are scared.
At the same time, we are carried by an incredible out pouring of love from friends. Our nurse said today that she has never seen the kind of support that she has seen for our family. It's amazing. I walked into our hotel room tonight and dropped my stuff as I prepared to write this blog then I saw a precious birthday bag on the table with snacks for us and a present for Maggie. It gave me the energy I needed to get through this and that is a picture of how we are. Every time we feel discouraged, someone visits, messages, or sends something that carries us to the next mile marker.
Going to bed.
Thanks for praying.