The last few days have been utterly exhausting. We met with our hospice coordinator Thursday and it went really well. She was warm and kind and quick. I love efficiency.
Friday morning I was able to get a last minute appointment with Oliver's GI team. He is having a lot of feeding issues and I was thrilled to have him seen so quickly. Oliver has grown taller, but he hasn't put on any weight and his BMI is continuing to drop. Not good news. We have adjusted his caloric intake and slowed his rate, hopefully these changes will help.
Both Matt and I woke up Friday feeling a lot of anxiety about our trip to Chicago on Saturday. We felt like we would be pushing Oliver to do too much. We didn't want to put him at risk. So Matt flew to Chicago alone to honor the life of our sweet little friend, Brooklyn. He was so pleased to attend and support our friends.
Today we met our new hospice nurse and social worker. These two women will be with us for Oliver's journey, however long that may be. He is slowing down and showing us signs that his body is growing tired. When hospice was brought in for Waverly, we were in crisis. We were unaware of the signs and our nurse had to alert us of just how far down the road we actually were. With Oliver, we know the signs and have spotted them. It feels less rushed and chaotic, but still incredibly stressful.
We will continue to follow Oliver's lead. He will show us what he needs and when it is time. For now we are slowing down. Taking deep breaths. And living while we wait.