Day 17: Another Day in Paradise
Today is the 17th day of our accommodations at CHOC PICU and Miss Riley continues to make small improvements. Her RSV is getting better, they lowered the oxygen level a little but she is not ready to come off of it completely. Until she can be without it we will remain in the PICU. The attending physician came in and said that they were most likely the cause of the RSV as the hospital is full of it, some things just happen.
We are trying to get Riley’s sleep clock reprogrammed, she’s up all night and sleeps all day. A mantra a lot of us used to live by but I prefer my daughter not be a party girl so we are going to put a stop to that right now. When she is awake and we can see her pretty eyes, she appears to be more alert and it is clear that she responds to women’s voices. Our nurse said that because higher pitch sound travels faster she will hear that first. We hope that her hearing continues to improve, I would love to see her respond to Daddy’s voice again. We have learned how to use the suction tools and try and keep her nose and mouth clear for her as much as possible, we don’t do quite the job that the respiratory therapists do but I am not comfortable shoving a tube that far up my babies nose. She continues to make progress and we will be able to go home soon, we don’t know when, but are looking forward to it.
Maybe it’s the stress of the situation, maybe it’s the exhaustion from not sleeping for days on end or maybe you are just a jerk, but in the weeks of watching over Miss Riley I have seen it all. The father that has tried everything to save his daughter for the past year except he won’t let the doctors do what they need to do to give her the fighting chance. The family that asked for an extra day for their son to be on life support to make sure every friend has time to say good bye. The guilt that they didn’t catch their child choking fast enough and they are losing their son. Parents that won’t lift a finger to help with their child. The emotional roller coaster that is the day to day of being sequestered in the PICU is almost unbearable. As if your own emotions are not hard enough to deal with and control, you have a floor full of parents, some without the amazing support system of family and friends that we have, and they want to unload their pain on someone…anyone.
I have done a pretty decent job of keeping the blinders on when it comes to dealing with other parents, I also believe that I may not seem like the most approachable person, even in my PJ’s walking the halls. I can stare at the floor with the best of them as I walk by the ones that I know, if eye contact is made, will spill their entire story to me. It’s not that I don’t care, if anything this experience has made me care, but my shoulders are only so wide. With one father it has turned into a game of cat and mouse. He is constantly on the lookout for someone to talk to so you have to avoid him at all costs. He has had security called on him multiple times so we figure it is best to avoid any interaction. I find it best to walk fast and stare at the floor or fake talk on my cell phone(don’t give me any crap, you know you have done it yourself).
For all of the stress and emotions, there have been some funnier times here as well. On this floor there is a Ronald McDonald House family area with some computers, a sitting area with a TV and some couches, some games for kids, a kitchenette that has coffee for the families, some free munchies and some private small rooms to make phone calls or converse with your family in a semi private setting. Then there are the volunteers that watch over it from 9am until 9pm, which we refer to as the Ronald McDonald Dictators. Now not all of them are bad, most realize they are volunteers, we are not here by choice, and do not have an agenda to steal the FREE coffee and pastries but others do not.
Since I haven’t been sleeping well I tend to roam the hallways at night, the Family room has a TV and couches so I figured I would watch some late night. Unfortunately, it was stuck on the Disney channel and turns out, they lock up the remote at night. Next morning here is the conversation:
Me: “Good morning, I was wondering if there was any way to have the remote left out so I can watch TV in the middle of the night, something besides the Disney channel?”
RMH Dictator: “I don’t know I am only here in the morning, are you allowed to be here? What is your room number?”
Me: “Yes,621. Could you leave a note for the last shift?”
RMH Dictator: “A note for what?”
Me: “Never mind.”
I forgot about it for a day or so then came back to speak with the last shift Dictator, an older woman who took her job seriously:
Me: “Hello, do you think there would be any way you could leave the remote out, you know, hide it somewhere, so that I could watch TV out here while I am awake at 2 in the morning?”
Old Angry Dictator: “This area is closed at 9pm and you are not allowed in here, no one is allowed in this area after 9pm. People steal the remote.”
Me: “Well the TV is on and all the lights, it sure doesn’t look closed. Is there supposed to be a gate to keep me out? “
Old Angry Dictator: “It’s just closed so you stay out!”
Me: “Can you at least leave the channel on Discovery or a movie channel and not Disney please? There are not any kids watching Disney that early in the morning.”
Old Angry Dictator: “No!”
Me: “Love you too.”
I was accosted for bringing a larger coffee cup than the 4 ounce cups they give you in the kitchenette, for not keeping up with the date on our food left in the refrigerator and for eating on the couch. I love that these volunteers take their jobs so seriously, I wish my paid employees cared as much as these people.
I am still made fun of for my snoring, the nurse the other night said she almost called a “Code Blue” because I quit breathing so long. I really need to get that taken care of. We have had almost every nurse that works in the PICU, know the names, faces and they know Miss Riley’s story. They stop by to see what pretty outfit and bow she has on today and always ask if we need some ice, a snack or something to drink. We truly are blessed to be in this hospital with these top notch doctors and amazing nurses that really do care about all of the kids they take care of.
As the time continues to go by and my cabin fever increases I am sure there will be a lot more experiences to share about our day to day lives here. Please keep our Riley in your thoughts and prayers as she still has a long road ahead but she will get there.
Dave, Megan, Logan, Mason and SUPER RILEY!!