This is from a journal I kept 10 years ago when my daughter had surgery. I thought it might be helpful to some who are just starting this journey with tetralogy...
April 10, 1999
6 am
Last night's xray was good enough to convince them to not do a chest tube for her left side, but her fluid output has slowed down and I'm worried she's destined for another one.
She has been out so much. I'm anxious for her to be awake more of the time but I don't want her to be miserable. Our nurse told us not to comfort her when she cries - she needs to cry to loosen all the phlegm in her system. We haven't been put to the test yet, she's pretty quiet and the few times she does cry she stops very quickly all by herself. As if it's too much effort.
We are staying, or rather sleeping, at the Ronald McDonald house since we live 45 minutes away. Walking out into the sunshine is so strange, it's as if I expected the world to stop rotating while all this happened. I got about 3 hours of sleep tonight and 3 earlier when Dad and Christy were watching her and I feel refreshed. Three is about the most I can do because I have to pump out otherwise it starts to be pretty painful. Even with pumping I was having a pretty difficult time. Without her my system just doesn't do as well.
I need her.
.......
9:30 pm
They've taken Sierra off all of her hard core sedation and narcotics and she's doing well on tylenol. I had been getting concerned that she was just too out of it, especially when one of the nurses mentioned the need to let her cry. She isn't going to cry if she's asleep constantly.
For the first time in days I got out of the hospital/medical center. Christy and I went to lunch at a real restaurant and then I grabbed another 3 hours of sleep. I found myself struggling to figure out what day it was. The normal rythm of life has disappeared in the blur of monitors, tubes and wires.
We were talking to some other PICU veterans about their kids, about Sierra, about the whole experience of being here. About the new way we measure days - by medical procedure. Four days ago, heart cath; three days, surgery; two days, removal of the drain tube; yesterday; the chest tube. We all do it. Theo Anderson's family are the real veterans and they give us tips on different things, give us ideas on dealing with being here for our extended stay. We learn what questions to ask, suddenly immersed in this strange world we are learning the language, using the words like incantations to help our little ones. We hear other's more tragic tales and secretly thank God that our road is not as hard. Hell, it's hard enough.
We even get a little competitive - is her baby sitting up? Baby Tovar doesn't have a chest tube and he had the same surgery as Sierra. And what's this about him being moved out of here to the third floor? Then you learn that he isn't moving and now needs a chest tube, or that her baby has had a set back and you feel bad about your silent competitiveness. I want all of us out of here. All of us.
Sierra seems to be swelling on the left side and her breathing looks a little labored. No xray till tomorrow.
Posts
