7.16.21 Inpatient 19

A couple of notes to you friends and family: 

A few people have asked about ways that they can help  us. The most helpful thing to us right now is knowing you are out there following along with us. It can be isolating and depressing here. Knowing that you care, that you are praying, and that you remember Aimee throughout your day is a blessing to us. At some point soon meals will be a big help as we are transitioning to Ed being home with the younger 4 kids. We may set up a meal train next week. That would continue to be helpful even for the first week after we get Aimee home. She has meds and other care happening round the clock right now, so lack of sleep will continue to be an issue for some time. A couple of friends have sent us Starbucks cards or there are also gift cards for the hospital room service, both of which are really kind as those 2 are currently our primary source of nutrition. 

In Aimee news for today, we aren’t there yet with her output. Still requiring IV replacement. No additional improvement since yesterday. Today we will increase medication dose again to a higher mg. Then we will track her trends and re-evaluate that change on Sunday. If the dose does not cause enough improvement, Sunday/Monday we can make another change. If this new dose is enough that she can remain hydrated, we could take her home. So... 2 more days. 

Aimee has been uncomfortable and sleepy with a higher heart rate the past couple days. We think she is having pain/discomfort in her gut from all of the changes we are trying. Adding some extra ibuprofen on top of the tylenol and diazepam she is currently getting to see if it helps. Unfortunately the stronger meds we would typically use would affect her digestion even more, which we need to avoid. She does enjoy watching shows on the iPad, so she grouchily watched a bit of Peg + Cat last night for about 20 minutes before falling back asleep.

When you think of us in prayer, please pray for Aimee that she would be able to absorb enough nutrition and fluids. Also, that her spinal wound, her pressure sore, and the sores on her face from surgery would heal completely. Pray for Caleb, Elliot, Walter, and Louisa that they would feel secure, cared for, and loved. Pray for Ed and I that, despite very minimal sleep, we would be mentally clear as we advocate for Aimee, physically alert when we drive back and forth, and emotionally... well that we would have grace for each other and for the staff. The continual confrontation and lack of personal space is incredibly draining. Any moment throughout the day and night doctors or residents or nurses or respiratory therapists or interns walk through the door and we need to be ready to explain, defend, process, and direct. It takes a toll pretty quickly.