Monday morning was rough. Monday afternoon was really good! And then came Monday evening…
Logan was really fussy. We aren’t sure why. When we laid him down for bed, he fussed every few minutes. We knew it was going to be a long night ahead. He fussed almost every hour, all night. We resorted to morphine to try and help. Yeah…the sleep only lasted an hour. We tried everything, stopping his feed, burping him, turning on Little Einsteins, etc. Finally around 9:30am we burped him and what looked like stomach acid came up into the tube. After we got it out, he seemed to rest easier. We thought he was just recovering from the night before, until around 1pm.
We decided to wake him so he would sleep that night. However, he did ever really wake up. He was up for maybe 30 min before falling asleep on me. He didn’t wake up when I moved him to the couch. I hooked him up to his pulse ox so I could go make dinner around 4:30. Logan was still sleeping. He did wake up for about an hour around 5pm then went right back to sleep. Around 8pm he woke up crying. We rushed to administer morphine and reposition him. It took over 45 min to get him comfortable again. He gave back into sleep as I massaged his little foot and toes.
The next hour was the toughest Brett and I have experienced yet. We sat talking about everything in tears. We have done so much more to Logan than we originally planned. We did this together every step of the way and have no regrets. However, we talked about him turning 10 months on Monday and Mothers Day the Sunday after that. We discussed taking the oxygen off of him and starting a schedule of morphine and ativan. Brett has a hard time hearing Logan cry. Its always been that way though. He feels sleeping and comfortable is better than awake and crying. I feel that way too…kinda. Its hard. I never thought it would come to this. I mean, we knew it was somewhat inevitable without a treatment or cure, but I didn’t “think” this day would ever come.
We have talked with our hospice nurse and we are trying to find where something went wrong. He is now considered lethargic 😦 Kind of like last time. We think the Gabapentin may be the cause again. Only this time because of a build up in this body. We are fairly certain it runs through the kidneys and we have noticed the past week he has been dehydrated. We are also trying a new medicine to help with stomach metabolism in hopes it will create easier bowel movements and he will be able to take in more formula. I’m not sure if this will solve the problem, but we have to try.
Logan slept pretty much all day today. He was awake less than an hour total. He is right next to me as I type. He looks peacefully. His heart rate is high and we are suctioning out thin, sticky junk about once every two hours. But his color still looks pretty good and he looks as beautiful as ever. Even with his hair a messy, dirty mess 🙂