Faith is doing MUCH better. What a difference 24 hours can make- on both sides of the day. Thursday night she was doing fine, morning came and she was not herself. As the hours progressed she began to worsen. We called Faith's pulmonary doc. and he suggested we go in to the emergency department. Since we already had an appointment the following day at the hospital (yes, on a Saturday) we thought we could wait it out. When she started turning colors we gave in and decided it was time to take her in.
So we here are. Good news is we are out of the PICU and back in our old room on the 8th floor. Faith's is still on higher vent settings (but off of the more powerful vent), and receiving a double dose of IV antibiotics to cover whatever junk she is growing. The good news is she is back to her spunky self (minus a trach full of blood tonight. And no, we have not been suctioning too much, in fact she's only been suctioned once today). Our hope is that she will be discharged tomorrow. A two day hospital stay? We'll take it.
I guess Faith just needed to visit her extended family for the Holidays. This all could have been a lot worse- it was pretty convenient it all happened on the weekend, and we were among familiar faces everywhere we turned. Friday night in the PICU, our nurse was one of Faith's primary night nurses from a year ago and the respiratory therapist on duty for the day was an RT we knew from St. Joe's. Of course we were among friends on the floor including one of Faith's primary nurses who took care of her for the 8 months she was in this room, and our favorite CA was here as well.
It's pretty surreal sitting in room 827 tonight. As you know, Faith was the first tenant in this room. The holes are still in the wall where her monthly calendar hung, a paperclip that held her butterfly kite is still hanging from a ceiling tile, and the butterfly I drew under one of the shelves with Faith's initials is still there. While our markings are still in this room a lot has changed since then. Our little girl no longer just lays in her crib unaware and unresponsive, nor sits on the floor, self-stiming, barely able to hold herself up. We had no idea how much she had shut down during those months until we saw her transform at home.
She is so aware now. She fights the doctors when they put their stethoscopes to her chest and challenges anyone who dares to suction her, with her IV fisted hand. Gone are the days where she would just lay lifeless during a blood draw.
She knows there is a world beyond these hospital walls and she knows she doesn't belong here. And we know this too. Eight months ago taking Faith home was terrifying. Last night when we arrived in the ED our nurse nervously asked us if Faith always looked this bad because "she looks terrible and you are both so calm.."
Yes, she did look terrible but we knew she would be OK. We knew she was in good hands, ours included. What a difference 24 hours makes...what a difference shedding one's cocoon can bring.
In the words of Hans Christian Anderson, "Just living is not enough," said the butterfly "one must have sunshine, freedom and a little flower."
Thank you for all of the well wishes.
Here's to our next update being from our little flower; home.
Jen and Brian