After years of this routine, I have come to know what to expect when my daughter is hospitalized with pneumonia. We enter a strange world where nurses and respiratory therapists and on-call physicians come in and out day and night and I attempt to maintain some semblance of normalcy. There is no privacy and I have no control compared to my regular life. At home I spend my days doing things of my own choosing, lots of cooking, cleaning, homeschooling, running, walking the dogs, errands. I go to bed pretty early and I get up with the sun and repeat . But here, I am basically just biding my time waiting for her to get well. I stay here almost 24/7 so I can make sure she gets good care and to be able to talk to the doctors and keep up with how she’s doing.
For example, the doctor on call just came in to take a listen to her lungs and tell me the plan for the day. I think she is getting close to being well. They are being very conservative in their treatment NOW, after trying to rush her last week and she not doing so well with that . But now I think she is could actually handle more aggressive weaning off oxygen. We will find out today because they are going to cut back on her breathing assistance. Today is Day 11 of our, hopefully, only 2019 visit. I see a light at the end of the tunnel, but I must remain patient or I will just get miserable. So far since I started writing this, she has been fine on the reduced support. But the question is how long can she last? They don’t want to wear her out and make her have a setback.
The cast of characters in this never-ending live drama is constantly changing as they do not work the hours or days that most non-hospital employees enjoy. The shifts last 12-16 hours. Most of the nurses seem to work 3 days then they are off again. The doctor that was just here, John, said he’ll be here for the next four days. He had the weekend off. I can imagine he spent it in his nice house, maybe golfing or cycling or antiquing, with his partner or friends.
The nurses are mostly young and attractive, seriously some of them look like models, of all races, and both genders. I have not had a bad one so far. There have been a couple of less than ideal, less friendly respiratory therapists. Maybe that job doesn’t pay as well. But most people smile and talk to me and all of them are trained to ask if I need anything every time they come in, but normally I don’t . There was one nurse that I spent quite a bit of time chatting with, actually there were two. The first one was when we first got here and he was very talkative and interesting and we discussed hiking and travel. The other one is in her early 40s and dealing with some weight gain so we discussed diet and running and children and how they pay attention to what we say about food and the difficulty of cooking healthy food while working.
This hospital is a smaller, suburban version of the main children’s hospital , providing the same excellent quality, free parking, closer to home, and as the nurses have said, more laid back. The main campus is extremely busy, large, and attracts patients from all over the state and even the world because of the availability of complex and expert care and is located in the middle of the city. This building, however, is surrounded by green space. I am treated to a 4th floor view of freshly planted saplings and older pine and oak trees , small retention ponds with fountains in the middle and the setting sun, as well as the busy interstate which is full of slow-moving commuters and big trucks on weekday mornings . Pastel colors, children’s art, and comfortable waiting areas make the experience feel less institutional and scary for families who come to the emergency room, outpatient clinics and specialist offices. The first floor has a small cafeteria that is not open on weekends, a coffee shop with Starbucks coffee and pastries, and a gift shop. The patient rooms are private and offer a bathroom with a sink and shower and a pullout couch/bed for the parent, plus a small desk, a TV that is mounted way too high on the wall for these old eyes, and a reclining chair. When my daughter was in PICU at the main campus, things were not so cushy. The rooms were not private and we had to sleep in a main waiting room in recliners or if we were lucky we might get a bed in the Ronald McDonald House family center for the night.
So what do I do all day and night? Mostly I stay occupied and distracted on my computer or phone, but I have also watched movies both on my laptop and on the room TV. So far I have watched Bird Box, loved it, Wonder, Ready Player One, and just half-watched about 20 children’s movies. I also spend time texting my best friend. I have written a few blogs, read a bunch of them, and spent way too much time on Facebook. My sister brought me some books so I read one of them yesterday, a short book by Gary Paulsen called Mudshark. It is written for children, but I love that Paulsen’s writing is never dumbed down and includes wonderfully interesting words and creative themes that many children’s authors evidently are afraid to use. I recommend this book. I have attempted a few runs around the building, but I’m sad to report that my legs and energy are still recovering from my 121 mile run so those attempts were mostly walking. Yesterday I managed 3 miles running and walking, but my feet are still bothering me with some numbness and tingling so I am not going to run today, just walk. I also spend way too much time thinking about and eating food that I have either brought to the room or go purchase downstairs. So far I have had several omelettes and two patty melts with fries from the cafeteria, a couple of salads from the nearby grocery store, and one wonderful trip to a Mexican restaurant while dressed in my sloppy hospital clothes. I think the waitress was an angel or maybe she could tell I was very sleep deprived because she seemed extra nice. Free coffee is available , which is pretty terrible tasting, but I still drink it to save money. I brought my own stevia and creamer. I am trying not to gain weight while we are here.
I try to sleep at night, pulling closed the dividing curtain that hides the parent area , wearing ear plugs and an eye mask, but it can be very noisy and I wake up often and just listen to what the nurses are doing. My daughter has had noisy breathing treatments every four hours since we’ve been here plus constant temperature checks. She does not like the deep suctioning and protests accordingly. Today and yesterday I was awakened before 4 AM. I nap when I can, but I’m not much of a napper.
The rest of my family is doing okay and getting by without me at home. I did go home for two nights and while there I cleaned, cooked and replenished the pantry. I seriously don’t think they miss me that much, except maybe for my utilitarian purposes. Since we spend pretty much all of our time together, I think we all enjoy a little separation from time to time. Of course I was already gone for three days at my race right before this hospital trip, so it feels like I have been gone a long time now. I am supposed to be volunteering at a trail race in two weeks, but I don’t know if that will be a good idea being gone again so soon. I expect that we will be home soon, so maybe I can still go to the race. But for now, I will try not to think too much about life outside these baby blue walls and try to enjoy this strange vacation where I have few responsibilities, but I am not able to truly rest or do much of anything fun.