Mid-day Update 4/3 Day 4

Hey guys - real quick update since last night's news.

Elle is still doing ok but we are definitely not out of the woods.  As often happens in ICU situations, especially combined with problematic neurological issues, things can change very quickly.  And most of the time, you take a couple steps forward and one back.

It seems Elle had a bit of a step back overnight.  Her chest X-ray showed a bit of fluid on her OTHER lung (the left one that had been healthy).  So they did a chest ultrasound this morning and thankfully, it was okay.  They were making sure that there wasn't a lot of fluid that would warrant a chest tube on that side.  And just to have a look around.  But again, it was okay.

They tried to turn down the vent settings a bit but then had to go back up (more machine breathing, less Elle) but we are trying again this afternoon.

Also, she just doesn't seem as active and strong as she was yesterday.  She is sleeping much of the time (although, this is not a change since we have been here).  She also seems to have a bit more junk she is trying to cough up from her lungs.  And we have seen a big increase in seizure activity today.

They are running a viral panel (bloodwork) on her to see if there is any virus going on.  We should see these results by the end of the day.  Until then, all the medical people have to put on gowns and masks to come in the room to prevent possible cross-contamination between patients.  Fortunately, we don't have to gown and mask and if the viral panel comes back clear, then they will take the precautions away (no more gown and mask for them).

They also did a spinal tap this afternoon to test for any infection/inflammation in her cerebral spinal fluid.

We are still trying to figure out when we should do the infusion vs the timing of removing her breathing tube (infusion before removing it or after) and trying to figure out if there is another underlying infection.

There are so many things to consider and to weigh out when trying to find the best way to treat her.  I remember in nursing school, much of the testing revolved not around a right or wrong answer, but around what is the best thing to do 1st, then the 2nd, then the 3rd, etc.  Which of course muddles the water.  Medicine is often not a hard science, but there is art to it too.  As much as we wish it could be black and white and completely objective, it can be so many subjective shades of gray.

Ok I think that is everything for now.  I'm sure I forgot something.  But anyway...

Feeling a bit more emotional today and just straight up sad for my baby. Please pray that we can grieve as we need to but also have clear minds and hearts as we work with her medical team to give her the best care we can give her.  We've had some good snuggles with Elle and are enjoying the bright sunshine coming through the window today.  Spiritually, I do feel grounded but the decision-making and the unknown and the fear makes my flesh feel utterly undone.  It's all just hard and broken.

Thank you always always always for praying for us.  Having an army of love standing with us is truly life-giving.

Much love!

Dana

(PS if we find out anything definitively, I'll try to update again tonight, but it might not be until tomorrow.)