Ed’s Post
Well another day in the books. Day 138 for the year. Aimee had another very sleepy day today. She still seems a little off to me and Rosa confirmed, which helps me to feel like I’m not completely crazy and looking too closely at things. Really the only things besides being more sleepy are the increased secretions and an elevated heart rate. We have been slowly moving meds over from IV to enteral so the length of time she is receiving meds has definitely increased, which could be causing stress on her body. At this point, we are doing 4 hours of just water flushes and approximately 5 hours of meds.
We are closing in on the end of our Trach training. I believe we only have one class left next week and we will be done. I thought somehow I was going to be more excited about this, however, it’s lost a bit of its luster because it is not the thing that is keeping us here. Honestly, we kind of knew back in October when we agreed to the Trach that it was going to be the gut stuff that was going to take longer than the Trach. We did not get an encouraging update today on the TPN supplies from the home care companies. They simply are not taking on new patients at this time. If you’re looking for a prayer request, pray that there will be an opening for us.
Where does this all end? It feels like a tunnel that just keeps going. Every time you come to a turn you think maybe there will be an exit, but instead there is just more tunnel. It know I need to stay present in today (I’ve got a shirt that says so), but it’s hard not to hope for the next chapter of bringing Aimee home. The other day, I was coming into the hospital and there was a couple coming out with their baby. The mom announced (she said it loud enough that everyone could hear her) “Wow, he doesn’t even remember what it looks like out here. He’s been inside for 26 days.”Perspective is everything isn’t it? Compared to what we’ve been though lately 26 days sounds like a walk in the park. I would be happy if we only had 26 days left.
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