6.16.21 ICU Update 2

Aimee has had a rough night. It has been a struggle to find a balance with different meds that keep her pain down without side effects. We are limited to IV meds currently. If we don’t manage it well, she is breath holding, causing sats as low as 7 (!). I think it hurts to breath deeply and this is her neurological response. Yes, she is on her bipap with oxygen all the time, but she can still hold her breath. Her heart rate and blood pressure go up with pain. She is moaning and restless. Yet, if we give her bigger pain meds, her blood pressure plummets down and they have to give her a bunch of fluids. So, here we are with a puffy girl who is fitfully sleeping with on and off breath holding spells. It is a helpless feeling when she is in such pain. 

Thankfully we are in the best spot right now. The ICU nurses have been amazing. They are better equipped to help her and their constant monitoring is a relief. When we move to the floor, we are the first line of defense and have to respond to Aimee’s needs because it may be several minutes until a nurse can come. And they are coming because we call for them. Here is it seconds until someone is in the room without us even getting up.

Aimee is being cared for by the PICU team primarily, but also by Ortho. We expect to have rounds with both teams at some point this morning. 

Here are a few more photos of playing a fun dice game together around the family table at home. Aimee has her own button controlled dice roller so that she can be a part of the activity.