8.4.21 Inpatient 38

Good news, we have the new lower density formula back in hand and now the hospital has decided to carry it. That is great reassurance for us that this same mishap will not be repeated. Aimee’s output has been perfect the last couple of days requiring no IV replacement, but we still have to get her up on full calories on the new formula to know for sure it will stay. She was started on an additional dose of probiotic along with the the prebiotic fiber supplement and they added a new rotational antibiotic to treat her Small Intestine Bacterial Overgrowth. We already had her on one every other week, but will now rotate with a different one for other bacteria. All of this concoction in addition to the new medication given throughout the day will hopefully be enough to keep her hydrated. We have to give it a bit more time to tell for sure. 

Aimee had another hypothermic episode last night that required several hours with a warming machine. We don't understand why this is happening. All of her labs came back normal, no infections evident. She does have difficulty regulating temperature sometimes in less controlled environments (IE. in the heat outside, she rarely sweats, and will usually allow her internal body temperature to rise), but in a very controlled environment to drop her temperature so dramatically without an infection? We are scratching our heads. 

Yesterday I met with the pulmonology team. We discussed all of our options, including a tracheostomy procedure. We would like to hold off on that agressive measure for now. I am hopeful that if we get Aimee home and she is able to have less trauma that she will improve her respiratory function to a more consistently stable level. If not, we will revisit the idea in a couple of months. We want to do whatever we have to do to keep her safe with the goal of her being healthy and at home with her family, but adding a trach would also add 1-2 months more in the hospital.

So, we are hopeful to get a bit more respiratory rescue training and to make sure she is stable overall through this week. If all goes well, we are very hopeful that everyone will sign off on her coming home early next week.