Do you have those days where it seems like nothing else could happen? Today is my day. Starts with the school nurse calling to say one of my kids has head lice. Just what I need at this juncture. Do you know how taxing that is in and of itself? Hang up the phone with her and hook Lillian up with her feeding only to find that it doesn't appear as if DH has fed her her AM feeding. ?????? Break down ensues. I feel so completely overwhelmed. I'm not sure that I can make it through all of this. Thinking of things from recent hospitalization that just boggle my mind. As if your child being there is not enough to make you weepy, how about being trapped in four walls, not having your children or husband around you, not having anyone around. Just you, your sick baby and a host of strangers that are there for their "job". Take stock health care professionals.....it's not just a job, it's MY LIFE. Backtracking a little, I used to work at our children's hospital 11 years ago as a secretary. Since our recent admissions I've encountered some of the nurses I used to work with, which was kinda cool. Anyway, one night I was upset because I asked a PCA to stay with Lillian for FIVE minutes just so I could get a breather....well, she looks at my like I've arrived from another planet. She informs me, she'll stay, but will most likely have to leave her alone if needed for an IV job down the hall. Needless to say I was steaming. I ran down and right back up and she said "well you weren't gone long" and I said I don't want her alone and begin to cry. I have no desire to see or speak to any person on that floor....I'm later informed (by my former coworker nurse) that I'm quote "in the room bawling and won't talk to anyone". quote "they just don't know what is wrong with me" HELLL------LLLLLLOOOOO. Close to the end of her admission I'm once again losing all tolerance of this hospital and my baby being so sick and needing company and needing a break...well, I just get Lillian to sleep (who by the way hasn't had a decent night's rest in 2 1/2 weeks) when Respiratory walks in to do a treatment which causes her to cry a little, but I manage to get her back to sleep. RT puts up the bed rail (which didn't latch) leans his 6'3" 300lb body on and it come crashing down waking my daughter up and keeping her up until 130 in the morning. When he came for the next treatment he wondered why my temperment seemed hostile. (bc of course she was still awake). For a hospital that has such a high reputation and seemingly so specialized, they miss the mark on so many levels. I caught respiratory giving her the wrong breathing treatments just in time, I had a surgeon tell me that there really wasn't fluid around her lungs, (um, hello, her chest tube drained out an entire chamber of fluid like 200mls) I had to fight tooth and nail to get them to give her pain medication. I kept getting this "well we don't give kids in respiratory distress narcotics because it supresses their breathing" HELLO- she has a trach for heaven's sake. Nightmarish. You know the saying bored to tears...that's true. It really happens. How about your baby laying there and crying and not being able to move due to the pain she's in. I wonder if that's a good enough reason to cry? Switching doctors and having to adapt to the ever changing decisions of those people?
Coming home, a wonderful blessing, but then facing all that has "happened" in your abscence. Any Mom knows what I'm saying. Like what in the world did these people do while I was gone??? It's frustrating. I'm always the un-fun one. While I'm very glad Matt was taking them to do things and keeping them occupied, I'm also mourning the fact that I'm missing it. Missing my family. Coming home and remembering all the issues we still face. Wondering how things turned out this way. Crossing my fingers and hoping we are out of the woods for a while. I know this post is long and jumbled but so much bumping around in my head and not being able to really express it in the right way.