My how time flies…even when you aren’t having fun. My last post was on Wednesday. Thursday we had a few friends over. One dear friend used to be a NICU nurse. I mentioned to her about him sounding like he has a dry cough. She listened for a moment and told me she didn’t think it was a cough. It sounded more like a grunt, similar to newborn babies. I had a brief flashback to right after he was born. He was taken to the nursery for 14 hours after birth due to a fast heart rate, not maintaining body temperature, and grunting.
Our pediatrician called a few minutes later checking in on Logan. I shared our friends thoughts and was able to put the phone close to Logan for her to hear. She agreed it sounded like grunting and was most likely due to air hunger (difficulty breathing). The oxygen doesn’t make the situation worse or better. From my understanding there is nothing that can “fix” this, so we were given the ok to put him on a 4 hour schedule of morphine. We also added Ativan (anti-anxiety) back in and dropped Gabapentin (nerve pain).
Friday and Saturday were pretty status quo. Logan slept 23+ hours. I struggled with the decision to do an enema on Saturday, but so glad our nurse was here and helped me with it. Our poor baby…sigh. His stomach seemed much better afterwards though. Not so distended. I also started struggling with how quickly everything happened. He was fine of Monday and then has slept since Tuesday. Its just heart breaking. We spoke with our palliative care doctor. It was a rather painful conversation…one I’d rather not relive and hope is wrong
Oooo! Something exciting did happen yesterday! Logan was sleeping and Lucas wanted to read to him. We didn’t think much of it since he has been sleeping so much and nothing seems to wake him. So Lucas sits down, starts reading to him and guess who opens their eyes! He wasn’t fully with us, but he did have open eyes looking at the book. Then before Logan and I went to bed (we are camping out on the couch 🙂 ) he opened his eyes again. There wasn’t much emotion behind them, but they were open and the most beautiful color of hazel.