8.21.21 Home Update

Today it has been 3 months exactly since Aimee’s ileostomy surgery. The first step of this extended journey. More than 2 of those months we spent in Children’s. The weather is shifting in the opposite way it was when we started. Summer is ending and we missed it.  

 

Aimee has continued to have issues with increased output and lower urine the past several days. She has shown some other signs of mild dehydration. We communicated with her GI specialist yesterday and we have made even more adjustments. We actually decreased her Imodium dose back to our discharge level, but tripled the fiber/prebiotic. At discharge she was at the max Imodium dose for her weight, but with our continued output troubles, her specialist pushed her to 50% above that level. As we have had more thickened secretions, ect she decided to pull back and try a different approach. I am hopeful that we will see improvement over the next few days to avoid needing to go back.  

Aimee’s energy level has remained mostly where it was at discharge. She has had 3 amazing days while home with 9-11 hours awake and off of bipap. Most of her days though she has only been awake for about 6 hours. This shift actually has some significant positives with it. As we allow her to use the bipap as much as she needs or tolerates it, her reserves are built up, and those 6 awake hours are energetic and engaged. I would much prefer fewer quality hours than a large quantity of meh hours. 

I am not sure where to go from here. When we came home in June for those couple days after her spinal fusion, I made a recovery plan. That didn’t pan out. I want to make a plan again, but am also nervous that this time won’t last. How can we go forward and reset ourselves in a healthy way? We have survived. We have eaten take-out and meals from friends/family and prepared meals. We have tried to sleep, though Aimee needs more care throughout the night right now with meds, positioning, and respiratory adjustments. At some point I hope to return to healthy living… for now we still feel on edge and hesitant to try for normal. I hope as we settle into these new routines, as Aimee hopefully plateaus, that we will find our new rhythm with healthy habits soon. We are so grateful to just be together. Even exhausted together. As one never knows what is ahead, we will savor this time for now.

Ps. I hope soon to individually thank so many of you for the different ways you have been on our team. It has been truly beautiful to have your help in the different unique ways. The errands run, the meals purchased, the cleaning up, the childcare, the messages, the farm help, the funds sent, the prayers and encouragement. We don’t want to do this by ourselves. Thank you for being with us.