2000
| November 16, 2000 The hospital is set up for parents in the children's wing. You have shelves (for snacks, dishes, coffee, clothes) and drawers (your child's clothes), and a bathroom in the room. You can get towels and there is a little communal kitchen - microwave, freezer and fridge, a sink and hot water. You can get paper bowls and cups and plastic spoons and forks. There is sugar and substitute, peanut butter packets and crackers. You can get to the vending machines or to the cafeteria (when it is open) in the basement two floors down. You can be in a chair or on the bench - or lay down on the bench. You can get blankets and pillows. You can get egg-carton foam to lay on. You can stay overnight if it is necessary. You can be quasi-comfortable. You can be there in support of your child while still being human. You are actually there to help - a second pair of hands - and for their psychological health. Your own sanity too. However, in PICU (pediatric intensive care), where the parent is going through even worse emotional ping-pong, there is no provision for being in the room with your kid. There is a small closet, a chair, plastic, and little else. Your back can take the chair only so long. They have three parent rooms, each with a cot and chest and a door, and 2-4 sleeping chairs, plastic barco-loungers that have seen better days. They are special and fold out to be a twin bed. I am in a conference room at night (with others) on a folding bed part of the time and on a sleeping chair the rest. They have parents in the PICU waiting room. Some sleep on the floor in the chapel. Others crash on the seats in the main waiting area, the alcoves around the halls and anywhere else they land. The cots are OK - the chairs (barco-loungers) are OK. If you are very, very tired. No matter what, you sleep in your clothes and get up stiff as a board. I do this routine until I near collapse, at which point I am sent to sleep someplace. Eventually they ordered me home. They have no time to take care of sick parents. And a mob arrived last night - 30 at least. They were everywhere. Complete with picnic baskets and bags of food. It overcrowded the communal kitchen facility (table with four chairs) and swamped what little service could be for the rest of us. There is one refrigerator. There is a limited kitchen in the ICU - you can get tea and coffee (mix your own). Not much else. There is, for all of us, one bathroom. One. For male and female. It has a shower and a sink with no counter. It does have a seat in the shower and one outside it. It has no real lock. I get to know where restrooms are all over the building. On the floor with the PICU, they do not have Men's and Women's rooms - but they have them in the basement near the cafeteria and on the first floor near the lobby. I haven't searched the third floor yet. I ask why in heavens name, there wasn't more care to provide adequate facilities for parents of critical children. Why, when it is MORE likely that we need to stay round the clock, that better facilities are not handy. A better chair, more bathrooms, more folding cots in more dorm rooms. We also have no phone access, no email, no contact with the outside world. We have little place to store things like a change of clothes and cans of soup for supper. The small closet or the car for those of us who have one and who have learned when to arrive so we can get a parking place. That's a whole 'nother tantrum! It turns out, the nurses tried, but the architects disregarded their input. Typical. Probably male architects and of course most of the nurses are female. I do know where, in a pinch, I can reach the nurse's bathrooms (with stalls and a shower). My older son, of course, showed me those the first night. Like you could keep that information secret from him! And since there was a phone in the conference room, he rigged up email. And since there was a rolling TV on a cart and an outlet for cable, he rigged up a coax and got cable TV. Damned efficient my older son. Ronald McDonald house was also overflowing and parents were being sent to motels in the area. Some of those stories were not very nice. (Rude and incompetent motel managers.) But going off-site is not an option for me. I do have to go home every 36 hours to feed the furry children. I crash there and sleep, do laundry (wash everything and start over) and go back. I cannot work very efficiently (I balanced the NT on my knees, ran the mouse down my leg). Once he's back in 2North I can get a table and type. Like I was doing before. I can work in the windows of time when he is sleeping. And e-mail keeps me sane. They tell me to write a letter of complaint. If I start one, it is apt to be very long. Mothers, especially ones under stress, need bathrooms with locks on the doors. We also need a place to make our coffee we shouldn't be drinking, a place to store the cookies we shouldn't be eating, and a place to grab a little sleep. My son prefers me in makeup and I prefer clean clothes, at least clean underwear, daily. We need the necessities of life to be a low noise level in the background while we deal with the more critical issues of our children's survival. Because we don't like to be distracted from the important things. |
For information about this file or to report problems in its use email dewhite@best.com