September 11th will always be the day we remember exactly what we were doing seven years ago when we heard the news. It will be a day that always strikes a chord.It's a day of reflection and remembrance. It's a day that reminds us how vulnerable we really are. I remember feeling scared of a repeat attack on the very first anniversary of 9-11, a certain degree of security was lost that day.
And today, I can't help but feel the same way on the first year after a very traumatic event that happened in our home. A year ago today we brought Faith home from the hospital in another failed attempt. As one PICU nurse put it when we were readmitted- "we were set up to fail."
Everything was wrong; The ventilator was held together with twisty ties because parts were missing. The head RT from our medical supply company gave us incorrect instructions on the heater that supplied the humidity, thus she wasn't receiving the proper amount which lead to a plug. We really didn't know the ventilator, we rushed through "training" so we could go home. And we had a night nurse who was coming back from taking three years off of work. This was her first night back and the first time taking care of anyone with a trach or on a vent. We were a little naive and completely and exhausted. We were just ready to be home.
For those who have been following this blog you know the story- we are awoken by screams and alarms. Our nurse barged through our door screaming that Faith was dead. As I have said before we have seen her blue before but nothing like this. There were many days in the NICU when I thought it was going to be the day. I would step out of the room while they resuscitated Faith thinking..OMG, OMG...this is it. That night when I reached for the phone I remember thinking....This is how my daughter is going to die...this is really it.
I can still remember my exact thought, the exact feeling as I reached for the phone to call 911 (While Brian resuscitated Faith....) I remember screaming into the receiver for them to come. There was a lot of yelling. The 911 operator tried to keep me calm but counldn't stop screaming. It took four minutes to get Faith back...while that might sound like a small amount of time in resuscitating time it seemed like eternity.
It was a simple disconnect from the vent in a place that should have been more secure. It was not the nurses fault. It was not our fault. It just happened. In an unrelated event Faith continued to have episodes after that, when we got the the hospital we learned she had a mucus plug in her lungs from not receiving adequate humidity.
This post isn't about placing blame or about rehashing old, painful memories. It's about how we have overcome them. After the "event" the last place we wanted Faith was at home. We lost our nursing and we didn't care. They told us it would be many months before nursing would come together again, we were extremely grateful for this. After spending 7 months in the hospital we couldn't wait to spend 7 more (and as you know that's what we did).
For the longest time I couldn't even be in our house. When I wasn't sleeping at the hospital I went to my mom's house. Once a week I would run home and quickly gather everything I needed. Each time I went home it just felt like death was there. I know Faith didn't die, but it felt like that to us. And in a way something did die. We no longer felt safe in our own home, and we certainly did not feel safe with our daughter. We thought about selling our house, rearranging furniture, painting the inside...anything to "cleanse" the negative aura that seemed to have engulfed our house.
Anytime anyone mentioned the prospect of going home (which never really presented itself until last Spring) my stomach would sink. Care conference after care conference the case manager would tell us apologetically that there wasn't any nursing and we couldn't go home. We smiled widely and said.."great!"
Over time the house felt a little less eerie but it was never the same. That year we didn't decorate for holidays like we normally do, we ate Thanksgiving dinner in Faith's hospital room, and for the first time in both of our lives we didn't put up a Christmas tree. For the longest time I couldn't bring myself to sit on the couch, where a few feet away Faith had laid there lifelessly that night.
A year later our house is bustling with life. We dug out all of our fall decorations and however tacky it might be, we have littered our house with fake fall leaves cheesy pumpkin knick knacks. We sit as a family every night on the couch, watching TV, laughing and just getting a kick out of Faith's spunky personality.
A year ago I could never have imagined feeling safe at home with Faith. Now I don't feel safe with the thought of Faith in the hospital! A while back a friend of ours who had a daughter with a trach told me the day was going to come when I wouldn't wake up thinking..Is this going to be the day I call 911? A year later...on 9-11 I can confidently say the thought hasn't even crossed my mind. :)