March 5, 2020
After what was a relatively good day on Wednesday Olly decided to test everyone working and maybe even some that weren’t. Starting around 4 am Olly woke up in pain which caused her feeds to be paused. After a short break we attempted to restart feeds but saw more pain and it was decided to stop feeds and start iv fluids.
Later in the morning (like 8 am) Olly tried something new and clustered a series of seizures resulting in her getting her rescue med for the first time. It not only stopped the seizures, it allowed her to get some much needed sleep.
Olly got to take another ride down on ultrasound to make sure that the pain wasn’t being caused by the J-Tube. It is not so we are good there but still need to figure out the cause. There are lots of thoughts still on the table.
We will have a Care Conference on Monday with drs from several different teams since we seem to be having issues in several areas. Overall we think the meeting will be a good thing. It will be a great chance to get all of the players in one room and make sure that we are all on the same page. In other words it is looking like we will be here until at least Monday.
In the meantime we will work to get her feeds back to normal. We are also on a video EEG now and may have and may have some additional testing over the next few days but we will see what comes.