It was another good day! It had its ups and downs, but a good day overall.

When I got there I asked him if he had been waiting for me and he said "All my life"! What a sweet thing! His nurse loved it! I asked when they put him back on CPAP the night before and she said he was on the trach collar ALL NIGHT! And his stats stayed good! She said he got a little distressed when they gave him a bath but he settled back down pretty fast.

He tried so hard to talk and with the inner balloon collar deflated, he can't make sounds unless the trach is capped. Unfortunately, I'm not good at reading lips and toothless lips at that. He doesn't want to put his teeth in for some reason. He wrote a little on a pad of paper, and I stopped and got him a white board which may be easier for him to use. Jessica said she may get him a speaking cap ordered so that he can talk. He was getting so frustrated when we couldn't understand him.

They took him off the precedex thinking that was making him too sleepy during the day, yet they doubled the amount he was given at night to see if it would help him sleep and it did not. He was awake most of the night again, so we were trying to keep him awake yesterday. They also thought it might contribute to the lower heart rate.

He sat in my recliner for a couple of hours yesterday which of course will help his lungs inflate more completely. All of the drs. I saw said that he sounded much clearer. He did have to be suctioned a couple of times, but most of the time he was able to cough hard enough to clear the secretions.

When they were putting him back to bed, because he needed to use the bedpan (which was another first) he got very combative again. It didn't take long for the precedex to get out of his system! So, they switched him to Xanax. I don't know how high the dosage is but he was on a low dose of that for years before the transplant. They were also going to give him something different from Benadryl at night to see if that helped.

I gave Jessica some suggestions for him at night, keeping the room as dark and quiet as possible, using only the hallway light to do something if necessary, not telling him what they were doing unless he woke up, just do it quietly. She said that would be helpful, she thought, but she did say that when I wasn't there, he did get very anxious, even if I left the room for them to do something. But, I can't be there 24/7. We'll have to talk about that some today, especially since I need to get the oil changed in my car. I will also need to pay the bills tonight and tomorrow and I don't want to do it from the hospital with their crappy internet.

And today, I don't really feel well. Not only am I tired, since it takes more energy when he awake than just sitting quietly while he's asleep or sedated. And the weather is finally getting to me. I'm hoping it's just normal sinus problems but my sinuses are draining like crazy and my throat hurts some, from the drainage. I would really like to call the hospital and have them tell him I'm sick and staying home, but I won't. It has made my decision about staying tonight easier. I couldn't decide if I was coming home to the war zone we have on New Years Eve, or stay at the hospital. And now, I'm coming home. I'll leave early enough that I'll miss the crazies on the road. Of course it's nice and rainy this morning and supposed to rain most of the day, which doesn't help. But, I filled up with gas last night so won't have to really be out in it and my coat has a hood. 
 
So, still making progress, tweaking meds, and keeping him moving forward. I hope everyone has a blessed new year. I hoping ours will be better than 2018 was, even if it will be a little rocky to start. Happy New Year!