Yesterday they decided to try sedation with morphine so they could pull back on the some of the other things Zoe has been getting large amounts of. It seemed to work. She had a nice peaceful day and an equally peaceful night.
Dr. Boyle is back today and during rounds they were discussing what happens when Zoe “wakes” up. They don’t want her paralyzed because her muscles will turn to pudding after awhile and she will have a very difficult time after transplant. That’s all fine with me. I don’t want her paralyzed any more than they do, but I do want her comfortable and this afternoon she wasn’t.
Before I get to the part where I got angry and was forced to behave badly, I’m going to update you on some of things happening to her physically. Because she has a tube down her throat, her nasal passages can’t drain and she obviously can’t swallow. So she’s been blowing snot bubbles and drooling far more than she ever has. When she starts to wake up and wants to breath through her nose is when the nasal drainage gets out of control. To help with that problem, we’ve been suctioning out her nose and her mouth. It seems to help. We also noticed that when she starts to stir, she becomes more awake if we rush to her and try to calm and quiet her. She responds to our touch and our voices and tries harder to overcome the sedation. So if we sit quietly and don’t touch her, she figgits a little and that’s it. It’s no where near as bad as it has been.
This afternoon she started to wiggle and I looked over and saw she was drooling pretty bad and had some serious whooper like snot bubbles. I woke Mike up so we could get her cleaned up. It was a big job and required 2 people. She started to get more aggitated and Mike went to grab the nurse out of rounds. It was after 10 and she hadn’t had any sedatives since 5 so it was probably time. Apparently he was told we were wating for the good stuff to come from the pharmacy. So we cleaned and waited and she got more and more aggitated. She had her eyes completely open, was trying to get up and was violently kicking her feet. All the while, 3 Dr’s (Dr. Boyle included) and at least 2 nurses stood outside her door and watched. I finally got fed up and joined them in the hall. I said I was under the understanding that we were waiting on meds from the pharmacy and if they were all too busy to please point me in the direction and I would go get them myself. Dr. Boyle informed me about the muscle turning to pudding thing and he said they wanted to see exactly what happened when she “wakes” up to see if sedating her less was an option. (that’s the short version). I said that was great but right now if she could get her hands free and get up out of the bed she would. She was that awake and that she was thrashing violently and I had concerns of her knocking the breathing tube out of place. He nodded. Apparently that is a distinct possibility. Duh. I informed them that this is what happens when she wakes up and she was in need of some help…..like now! I turned and left them staring blankly and went back into her room to help Mike. He was suctioning (the more upset she got, the more snot bubbles she blew) and trying to calm her to no avail. I asked her if she was upset and scared and her eyes got very wide and she shook her head. She tried to get up again and Mike and I held her back down and that’s when she puckered her little lips around the tube and started to cry. I think both Mike and I saying loudly “Shhh baby! Don’t cry” got their attention because they abandoned rounds and the nurse gave her something to calm her. Finally. I guess they had had enough of the show were ready to change the channel.
Needless to say I’m beyond angry today. There is not excuse for leaving my daughter to cry and be afraid. It won’t be tolerated and I think I made that clear. I hope I made that clear.