Tomorrow is (hopefully) going to be a big day for Hannah. She gets her trach changed out by Dr. Albright, Dr. Roy’s partner. This is a huge event for me because it means she is ready to be finally weaned off the sedation and paralytics. It means that we are one step closer to getting her to Vegas. It means, most importantly, one step closer to getting to hold my baby girl.
I miss holding Hannah so much. It is something I took for granted, even though I lived every day thinking about her condition. I go back to thinking about the last time I really got to hold her, and that was 22 days ago in the TCH ER downstairs. She was so inconsolable, thrashing back and forth on me, trying to get comfortable.
There is a reason I have not left the hospital here, and it is not because I am now “homeless.” It is because I physically NEED to be here. If something were to happen, big or small, I want to be right there for her. I NEED to be there listening to rounds in the morning so I know exactly what the doctors are talking about and what they are thinking. Even before we “moved,” I would not go home and switch nights with Daddy. I just couldn’t.
I realize that this is not a new thing for me. Looking back to when Abigail was in the hospital for almost 3 weeks for her pneumonia, pleural effusion, and empyema, that I lived here at TCH once she was transferred from our local hospital. Even then, I think I went home for just one night, and I could not sleep that night, even though the hospital was just 15 minutes away. That was the last time I would ever let one of my children be at the hospital without me.
Is it healthy? Probably not. Can I change it? Nope. Do I want to change it? Absolutely not.
I will not leave this hospital until Hannah is ready to leave with me. I don’t need “breaks” away from the hospital because if something were to happen, I don’t think I could live with the guilt of knowing I was not here. I do go outside on occasion, maybe for a walk across the street to Chipotle or CVS, but that’s about the extent of my “away” from the hospital. I spent most of my time between Hannah’s room, the PICU waiting room, the Ronald McDonald House, walking the halls (of which I have probably logged quite a few miles already), and going to the cafeteria/McDs/food court for meals (I have never eaten by myself so much in my life!).
Let’s face it. ”Getting fresh air” when it is 90 degrees and 90%+ humidity is not really getting any fresh air, but rather it is just giving you another reason to take an additional shower! (Trying to inject humor here).
With the exception of having two friends come to visit, I have really not asked for any visitors because I am just trying to “get through this.” My two wonderful friends who did visit cried after they saw Hannah, and it was just too hard on my heart to put anyone else through that. I have made friends with some of the families that have been here a while, and I have become such a “regular” down in the PICU that I don’t even request to have my name on the RMH room list for the night, the PICU receptionists automatically do it for me.
I am hoping, hoping, hoping for that time when Hannah finally turns around so that I CAN enjoy visits from all my local friends before we get transferred, so I can feel comfortable around them, just relaxing a bit, knowing that Hannah is on the mend, and not having to worry like I have been.
I keep reminding myself that this period of time is just another chapter in my crazy life. Hopefully, this chapter will end soon, and I can dive in, full force, into the next chapter.