The one inch crack at the bottom of the door reveals intentions before the door opens.
Were they just walking by? Pausing to visit with a colleague? Or coming into our room? Is there one or more of them? It typically is a face we've seen before either the nurse on this shift, the nursing assistant, a respiratory tech or someone from the medical team who following him.
I typically wake with the sun as my body covets movement. But a workout probably won't happen today either as the humdrum busyness of hospital life doesn't afford the opportunity for anything normal. The first doctors usually round into the room anywhere between 6 and 7AM. Typically the same doctors we saw yesterday with possibly a few new stragglers. They look at Max, ask if anything new happened overnight, ask if we have questions then say someone will be back around later.
Nursing shift change happens at 7AM when a new nurse comes on who may have never seen Max before. The easy shift changes are when the same nurse from yesterday is back. The new nurse asks lots of questions, tries to catch up on the current hospital stay and baseline medical conditions. We typically assess our comfort level with the nurse in the first visit into the room at shift change. Is this person competent or are we going to have to stay on them all day?
Somewhere before 8AM a nursing assistant will come in. They will take his blood pressure, check his temperature, and weigh any new diapers. The blood pressure cuff they bring in with their portable blood pressure machine rarely works on Max so they try multiple times until his arm is blue and he's mad. They typically come at the wrong time, just after Max has gone to sleep or he's settled down from being upset. Inevitably, he is roused again and we start to get him settled again.
Next comes morning medicines. His morning medicines are a routine we have done for seven years. We can do them in our sleep. But instead we watch someone we probably don't know, mix the medications that keep him alive. We hover around to see what meds they are using, what amounts, and we verify each before it is given. Mistakes are often made and our belligerent paranoia demands we stay on top of it.
By now we've arrived at nearly 10AM, we lament that we haven't eaten breakfast. "It's probably too close to lunch to still eat breakfast." The primary nurse pops in to check his status. Deana and I put our heads together of what we need to ask the doctors. What is not going correctly? Where are we unsure about what they are doing? Who do we need to talk to and influence? Usually one of us is more ramped up than the other. The calmer of us provides a sounding board, asks questions we might anticipate from the doctors to refine precisely what we're going to say. Better to say the inflammatory things to each other and speak with a concise, unified voice than seem roused in front of the doctors.
We arrive at lunchtime and the twice daily ritual of trying to figure out what to eat. The cafeteria is unappetizing and expensive. The restaurants choices mean leaving the hospital and we've already eaten everything close in the last few days. It's incredibly expensive to eat every meal out but home is too far away to prepare food and we probably don't have anything there to prepare anyway. We settle on something where we can both find a choice and determine the best time to go.
One of us arrives back with lunch which we eat in Max's room. Throughout the day including lunch, we continue to scoot him up in the bed, change diapers, field questions and interactions with the nurses and nursing assistants. We check medications before they are given. We try to keep Max entertained with opera or shows he likes to watch in-between his catnaps. Deana and I look out the window, browse on the computers or talk about the current medical situation we're addressing.
I can't concentrate to read or focus on current research interests because of the numb state induced by lack of sleep and exercise. We muster enough alertness, congeniality, or forthrightness to watch for changes in Max or deal with the medical teams as needed.
By mid-afternoon, we think about evening. Do we have clean clothes? We may or may not have gotten a shower in so perhaps someone has a shower. Is there anything pressing at home that needs to be done? Where is Abbey sleeping tonight? Does the dog need anything? What do we need to emphasize to the doctors before they leave for the day? Who gets to sleep tonight? Where will they sleep? What will we do about dinner? How long will this numb second-life continue?
We decide we don't have clean clothes. The house should be checked. Maybe the plants need watered that aren't on the irrigation system. We don't have a sleep room that Abbey can sleep in tonight so we should probably get her to a friends house.
I leave to head to the house, stopping along the way to do errands. Abbey and I stop by a rock climbing gym to see if there is availability for a class she wants to take.
The house is dark, closed up. Piles of laundry. Dishes where we left them. Stacks of mail. On long hospital stays, it always seem frustrating to me to have the memory of this other life. The life that is our normal. I bring the medical supplies in that have arrived on the porch. Check the mail. I walk around the house like a refugee, trying to figure out what I need to take with me to our temporary housing. Projects are left undone. Anything in the refrigerator that needs to be thrown out?
Some things flourish when left to nature, some suffer. The garden is a wreck. Weeds growing. Plants out of control. Plants dying. We'll pick up the pieces when the hospital stay is over. We always do.
I get a text then a call from Deana. The fever is back.
The same fever they thought was fixed.
The same fever that they don't have an answer for.
The same fever that will prolong our stay...yet again.
I don't even pretend to know. It's so far from the "Holland" they tell us we can learn to love when our life doesn't go as planned and our children come to us with different wiring and different needs than one could ever hope to prepare well enough for so that there's some semblance of "normal".
Right now? Right now you are in a place and it's a too long time that you guys have been there, at that.
On the other side sits the rest of us who wish and hope and pray more than anything that we can help in some feeble way, knowing deep down, that just like you and Deana, this time it's not in any of our hands.
So, we come here when you do, offering our thoughts and our presence, in response to yours. Somewhere, though, it matters, right? Somehow, all of this means something, even if we don't know what.
3 words, thats what i feel right now. pray, proud and thankful.
Here's to hope and sleep and a shower. I'll be praying. We know those shadows under the door too...
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