More infection

Samuel had a really good few days last week. He seemed to be rallying well beyond what we could have expected and the sedation wean and ventilator weans were slowly moving in the right direction. He went back on drip feeds on Friday to see if his belly was ready to try again. There had been no indication that he'd had an infection after his night of vomiting and it seemed like he was clear. The doctors were so pleased with how he was doing, even though we all knew that things needed to move slowly for him. I had a good talk with Dr. Cathy Ross where she answered my many questions and offered me reassurance and some mama-nurturance to boot. 

On Thursday I got to hold him and he spent four glorious hours in my arms. He was peacefully awake for about a half hour of that time and we got to coo and gaze at each other. (Okay, it was me cooing, but he would coo back if not for that darn breathing tube, I'm sure of it.) He was so calm during this time and I drank it in with every cell. I could feel the connection to my baby even though I held him still in one position so that his breathing tube was stable, had to call a respiratory therapist if I so much as needed to shift my weight. I knew that there would be hiccups, that there are several months of hospital time before he might come home. But I could feel the relief of knowing that he was healing, that the months of waiting for him to die were most likely behind us now.

Since then, Samuel has been increasingly unstable. It started out as just some extra touchiness upon handling, desatting (dropping oxygen saturation levels) and bradycardias (dropping heart rate). Since his sedation had been weaned back, it was assumed he was just a little more agitated. He got some Tylenol or a bolus of extra sedation if he seemed too uncomfortable or if his number just wouldn't return to normal. They started another pain medication that has less of a dependency effect to help him wean off the hard core drugs and still be comfortable.

For the first time, I saw my baby not just make his grumpy face but really, earnestly, cry. He doesn't make noise because of the breathing tube but his face is in an all-out wail and he wriggles in distress. I try comforting him with my voice or touch but nothing works. My whole body begs to pick him up, cuddle and rock him, nurse him. He gets extra oxygen, extra sedation, whatever they can do to calm him. Sometimes these periods would last fifteen minutes before he would settle, the whole time with monitors beeping off as his numbers dropped. Now these periods are lasting an hour or more.

There are signs of intestinal inflammation and they want to make sure that's not an infection. Yesterday, they took Samuel off of his drip feeds again and started anti-biotics. Today I came in and found an infection alert on his door. His cultures came back positive for another staph infection in his lungs. We need to gown and mask to go in his room, in addition to the usual hand-washing. We are waiting for more specific information about what his little body is fighting but some generalized treatment has already been started.

It takes little for my fear to surge. I sit in his room and inhale, then exhale. I am never without my prayer beads as they are so comforting to me but I forgot them today. I remind myself that I am connected without them. It's okay. In the moment. Ride the wave. Breathe.

[Sorry I have not updated here more. Chris went back to work last week and it has been a bit overwhelming. I will have photos and such to share when I am back on my home computer instead of at the hospital patient computer.]