7.24.21 Inpatient 28

Sigh. This is getting old isn’t it? I wish I had something interesting or brilliant to share tonight. Aimee and I are sitting in bed together. It’s been a long day of respiratory related issues, dealing with a wound on her nose that has progressed. Now wound care and the respiratory therapists don’t want us to use her primary mask, but when we use our back-up option, we have these very scary episodes where she doesn’t breath. It has happened 4 times today. 

I did have a long conversation with the medically complex care (MCC) team member today. She encouraged me to consider being creative with compromising on formula changes. We don’t have to do one kind or the other. We could agree to a certain percentage with the agreement that there be a plan in place for returning to 100% real food when feasible. 

She also encouraged us to add gabapentin. Many of the MCC team members and the Palliative Care providers have encouraged us to consider it. We were going to wait til after this situation was resolved so that we wouldn’t muddy the waters. However, apparently it can help with the severe gut pain that kids like Aimee have. We are going to discuss it more with her team tomorrow. It could help make the formula changes easier on her.