Breathe Missy

As I was waiting in the ICU parent lounge for Mya to get settled into her room the couple eating their cafeteria dinner at the big round table caught my attention. It was obvious they had been here before. We got to talking about how the second you are back it feels like you were just here, like those months you had at home between admissions sort of fade away. Their parting words as they tossed their remaining fries and headed back to their child were this: "This is our 5th ICU stay, we are hoping it is our last". And that is when I knew that our situations were quite a bit different. Because I was sitting there hoping it wasn't.

In retrospect we have been noticing some changes in Mya's health. About every third week she spends a few days requiring oxygen during the day and nestled in there is a day where she cannot come off bipap. She never really seems sick but does have increased secretions she is working to clear, so we chalk it up to illness. Most nights she has periods where she alarms for desaturations and requires numerous readjustments and breathing treatments to get her to the morning. When I hold her for our nightly cuddle she immediately falls asleep like she has been waiting all day for my shoulder. The range for how she needs to be positioned to avoid obstructing her airway has seemed to be shrinking. Her oxygen sats are all over the place and we have just become accustomed to being satisfied with lower numbers. These things happen slowly and so bigger issues can kind of creep up. It seems that bigger issues have been creeping up.

On Friday I sent her to school grumpy. She came home grumpy. Mya doesn't typically complain so I suspected something was up. She gave me her 'please come hold me so I can fall asleep cry' and so as soon as I got Ella and Clayton settled with lunch I went to give her her wish. As she nestled into my shoulder and instantly fell asleep our cheeks touched. She was ice cold. I got her under a blanket and pulled out the pulse ox monitor to confirm that she needed some help. She was barely able to reach 85 - 90% on 3 liters and her temperature wasn't reading on our digital thermometer, so off we went.

In the ER they told me they thought it was pneumonia, but the story in the ICU quickly changed. All of her labs came back normal. Aside from a low cortisol level there is really nothing to fix. She is not able to use her full lung capacity. Her lower right lobe was completely dark from atelectasis. After a day on bipap it opened up again, but her tone is limiting her ability to maintain her airway. Her shallow breathing isn't enough to keep her sats up. She just can't breathe well enough to support herself.

We don't really know what this means going forward. She did decently well coming off of Bipap today after a number of breathing treatments. We were able to wean her oxygen down to 4 liters. If she continues to do well when she comes off of bipap tomorrow morning we could take her home on oxygen. Maybe things will continue as they have been for a while with periods of health and alertness and weeks of a sort of recharge with extra support. The hypothermia is a reaction to the stress her body is under and the inability of her unique brain to properly regulate. Maybe now we will know what to watch for and can have a plan to help her. Or maybe she will go downhill quickly. Our first goal is to become as informed as we can be and then to get her home.