I am writing this post from Charlie's bedside in the ICU at the Children's Hospital, as she sleeps...finally. We came here last minute to start Charlie on, and learn how to administer, bipap (to help her breathe). We will be here anywhere from 3 days to a week. We were trying to avoid coming here because we fear that she has more of an opportunity to catch a cold, but luckily it's mid June and we've been assured that all of the children are post operative and don't have any communicable illness'.
In the span of a week we have gone from using no special apparatus' apart from Charlie's g-tube syringe feedings, to four apparatus' including the g-tube. We will now be using a suction machine to collect Charlie's secretions so that she doesn't swallow them and choke, as well as a continuous feed machine that we will use to feed Charlie slowly over time rather than all at once like we do with the syringe feedings (this helps prevent against her possibly vomiting and asphyxiating on it from ingesting too much too fast) it uses a special IV type bag that attaches to either her crib or stroller, and we will also be using the bipap in the morning and at night to get Charlie used to using it before she needs to rely on it.
Holy moly it's been a roller coaster ride of emotions this week, yet I didn't even really notice them until today when they finally broke through the surface in the form of tears. Lots of them. Over and over again. In the hallway at the hospital. In the car when I had to pull over and call my friend Christie to listen to me and talk me down, in front of the nurse while she was putting on Charlie's bipap mask, and in the hall of the hospital when my friends Christine and Nick came to drop something off for me. Matt asked me this week, "Cher, do you think we are in denial about what's really going on with Charlie?" I thought about it and sighed and said, "Well yeah, but if we really faced it, we'd never make it through the day. We'd stay in bed crying and neglect her because we'd get too caught up in her diagnosis...and how is that any good for her, or us?" I said, "I think it works this way on purpose, a little denial is a good thing and it goes a long way...it's self preservation." And then we checked into Children's hospital today. And almost immediately I ate my words. After virtually cruising along this past two months with no hospital visits since her g-tube surgery, besides her daytime appointments with the respirologists and neuromuscular clinic, I was shaken awake...HARD...like I'm talking REALLY HARD...like hard enough to cause permanent damage.
After crying the first time today, Matt tried to comfort me and make me feel better by saying, "Aww Cherie don't worry, she's OK, she's not sick or anything, we're just here to get her on bipap." But, it didn't console me at all..."Matt, she's dying...you can't really get any sicker than dying. Whether she's only in here to get used to a machine or she caught a cold...it's all because she's dying." I defeatedly replied. And that's how I feel today. It feels like we are just trying to soften the blow for Charlie, for the inevitable. And that's how I feel when I come here..surrounded by all of these sick little angels. It's just so sad and so senseless.
Remember when I met that woman in the gift shop the last time we were here? Charlie was getting her g-tube surgery and her daughter had brain cancer with a 50% survival rate and was getting surgery as well? Well, we've since kept in touch and are facebook friends, but with everything that's been going on with both of us , we've never reconnected. Shortly after we checked in today I got a facebook message from her asking if we were in the ICU because she had sworn she'd seen Matt and that her daughter was in surgery today and that she would be staying in the ICU for several days as well. I replied, "Yes! it's us!" She said she felt we were living synchronistic lives...and I could not agree more! Our daughters are only 2 weeks apart, our husbands are both Matt's, We are both celebrating our 2 year wedding anniversary's around the same time (mine and Matt's is actually tonight) our daughters both have very serious illness', we came together 2 months ago by accident when our girls were getting surgery, and here we are again...meeting in the ICU. I really believe that some people definitely come into your life for a reason.
I'm going to try to get some sleep now. Matt and I are trading off, I sleep days, he sleeps nights. I'm a light sleeper so the beeps of the machines and the lights from the nurses station make it nearly impossible for me to sleep...but i'm gonna try.