Field Notes from the CICU
We wake up at 6:00 in my sister’s spare room. Lyndsay showers first while I prepare breakfast and the pumping supplies. Equipment that once seemed so foreign, with parts that I struggled to detach, now comes apart easily in my hands. By now I have a system for washing, drying, and putting it all together. I return the equipment to the room we’re staying in and once Lyndsay has set up, I bring her breakfast. After eating my own breakfast and showering, I pack my bag for the day. Typically it has a few books (currently The Hunger Games, The Invisible Man, The Martian, and The Lorax), my notepad, electrical cords, an assortment of pain killers, a bottle of zantac, some low dose Xanax, toothbrushes, pens, a thermometer, a small book of tehilim, a few snacks (mostly chocolate), some sanitary pads, and a collection of bills, medical forms, and medical journal articles. When Lyndsay finishes pumping I wash the equipment and our morning dishes while she continues preparing for the day. By about 7:15 we hit the road. What was a 15-minute drive during the holidays has become 30 now that work and school are back in session, so we tend to arrive just as the CICU opens back up at 7:45.
Outside the doors to the CICU is a bell with a video camera. We ring the bell and after they verify who we are and who we’re coming to see, and once the nurse’s station has been notified, the double doors open and we can enter the CICU. Once inside, we turn left at the doors and approach the industrial hand washing station. As we scrub our hands we read the flyers posted above the sink. Under a heading titled “Fun Opportunities” is the schedule for the family CPR class required before discharge. It’s difficult to tell if this is a bit of off color humor or if the class is indeed intended to be fun. Having taken the class, we can verify that, thanks to the instructor, the class is at least weird, if not fun. Her darkly dyed hair, flowy clothing, and flourishing movement, combined with her near constant liturgy of terrifying tales of near death experiences, injuries, and infections, calls to mind some crazy Hogwarts professor. When all is said and done, we’re sure she could save a life if it comes down to it, but we’re less sure that we’ve gained the skills to do so ourselves. With any luck, we’ll never know.
There are also flyers that list the times for the other required courses. First, the discharge class that taught us about the medicines we’ll be administering to Raphael, how to recognize an emergency situation, and what to do in such a situation. And the last class we have to take, the car seat class, taught us that you, yes you, are doing it wrong. Something like 90% of car seats are being used incorrectly. We also learned that there is almost no situation where a rear facing car seat is not the best choice. Like, if they made adult rear facing car seats, unless I was driving the car, I would want to sit in one.
To the right of the handwashing station are a series of metal and glass storage cabinets with an electronic padlock. These cabinets contain the tools, gadgets, and do-dads that help the CICU function. Most mornings we arrive as the cabinets are in the process of being restocked. One of the guys who does this, told me about how much he loves his job. Working early makes it possible for him to pick up his daughter from school each afternoon, makes it so he never gets stuck in traffic, and the work itself is one of the many vital tasks that helps the CICU save lives, so contributing to that in any way is rewarding. Throughout the day, another person will fill up a cart with supplies and take it from room to room to restock. When the nurses and doctors work with our baby, not a moment is spent searching for a tool or looking for one of his medicines. Everything is always already prepared and ready to go for whatever they need to do.
180 degrees from the supply closet, against the far wall, the rooms of the CICU. Rooms 1 and 2 are the only ones with actual doors and walls. The rest can be closed off with curtains, but otherwise have waist level counters and partial glass dividers that separate each from the other. And unless a minor surgery is taking place or a mother is breastfeeding, the curtains tend to remain open. For the most part, rooms 1 and 2 are reserved for older kids or babies that need to be quarantined. We’ve seen some kids in those rooms playing video games, but for the most part, none of the kids in the CICU get to do much that gets their blood pressure up. To the left of these two rooms is another set of double doors. They open to the staff elevators. When a kid gets taken to surgery, they go through these doors, up one floor, and into the operating room. When Raphael went up we rode with him and another family. I don’t quite remember exactly how we got there, but Raphael was taken one way, and we were ushered into the surgery waiting room. To the right of the two rooms is the rest of the CICU. We are only familiar with our own section, which contains a total of eight rooms, 2 with doors, and 6 with a curtain and some cabinets. Each row of cabinets is filled with supplies, and at the end of each section is a sink with a soap dispenser, a sanitary foam dispenser, and a sanitary gel dispenser. The nurses seem to rotate among the three options and I’m never sure if there’s a rhyme or reason to their choice. Considering they sanitize their hands hundreds of times a day, it very well could just be for a little variety. Anytime they approach a patient’s bed or whenever they have touched or are going to touch any piece of equipment, they sanitize their hands. And so, we do as well. I’ve likely washed my hands more in the 21 days since December 19th than I did the 365 days before. We balance the handwashing and sanitizing with generous application of lotion, but still, by the end of each day our skin is desiccated. Hundreds of small white lines trace cracks across our hands. As I open my hand and extend my fingers I see the skin pulled taut over the flesh and bone beneath. I wonder if the nurses’ bodies adapt or if it’s just one of the marks of the job.
The floor is made up of large sectional tile spaces – unassuming maroon, tan, and a yellowish beige – flowing like waves across the unit. Parts of the ceiling are what you might consider standard hospital/school white tiles with interspersed fluorescents. Other parts add to the wave like quality of the floor. A yellow plaster section, complementing the unobtrusive colors of the floor, contains recessed incandescent lighting that shines down on three island sections across from rooms 3-8. On the island facing us sits two computer monitors that show the vital signs of all the patients in the unit. I find Raphael’s and compare it to the others. Heart rate, at 142 is OK, but not as low as it has been. His O2 levels are at 94%, a solid 2% above what they hope for. His arterial line reads his blood pressure as 82/36 (52) and his cuff reads it at 57/47 (50). His respiration rate sits between 16 and 60, but usually sticks around in the high 30s or low 40s. As our doctor has been saying, he’s doing reasonable, especially for his size.
The islands also have a couple of other computers on them, which I’ve seen used for anything from reading lab reports to reading what looked like a shopping list. But really I’m only guessing, because it’s all just numbers and lines on a screen from where I sit. The nurses also use the island to house their backpacks, to print off any reports they need, and to store the multi-colored stickers used to mark the different lines that each patient has. Pink for Sunday, orange for Monday, green for Tuesday, etc. The base of the islands, along with the walls and the cabinets of each room, is a cool pastel orange – calming and childlike. Raphael has toys this color. One day he’ll press a glob of silly putty just this color to a comic strip and get blown away by the everyday magic of words and images transferring from one object to another.
In between every other set of rooms is a station with two computers where the nurses sit to enter data about their patients. Above each room, parallel with the nurse’s station, is the room number and a small light unit. The lights are green and orange and, with an accompanied steady “ding…ding…ding”, will flash when something is amiss with the patient’s monitor. The soft ding is likely meant to not alarm new parents in the CICU. And when you’re new to the unit, really any sound coming from your child’s room will be alarming. Beyond the unobtrusive sounds like phones, the rattling of storage refrigerators, the bubbling of the respiratory machines, and the music coming from the “Care” channel (a channel dedicated to video imagery of calming nature scenes accompanied by music that’s vaguely new-agey and completely innocuous), there are plenty alarms that sound worrisome. The slow methodical ding mentioned above happens when a stat isn’t what it’s supposed to be. More often than not this is because the baby moved in a way that made it difficult for the sensors to read the stat. Then there’s the doorbell sound (think: entering a convenience store) that indicates a medicine or a feeding line is empty and needs to be replaced. And then there’s a much more rapid “ding ding ding” that repeats if one of the stats becomes dangerously wonky. This typically happens when a baby is agitated (because really, whose blood pressure wouldn’t spike when a stranger is trying to wipe you after you’ve soiled yourself). But sometimes it does means something different, something worrisome. And it’s nothing that I’ve been able to pick up on, but occasionally the rate of beeps combined with a quick glance at the screen will cause five or six members of the medical staff to rush to a bedside. If it’s a really serious issue, the CICU shuts down and any visitors are asked to leave.
Hanging down from the ceiling towards the back of each room are two large electrical units that can swivel about. The one to the left of our son’s bed houses the respiratory equipment. At this point most of it is turned off. When he was intubated, though, a long accordion tube, connected to oxygen and to a monitor, traveled directly into Raphael’s mouth to help him breathe. Today he sits with a much smaller nasal cannula blowing into his nose. The left side of the bed also housed his chest tube back when that was needed. As post-surgery blood found its way into parts of his body that it shouldn’t be in, the tube sucked it out and deposited it into a container at the foot of his bed. The other day I glanced at the room next to ours. The baby in that room had a tube and for the briefest moment I thought “why the hell is there a bloody tube coming out of that baby!?” briefly forgetting that my son was dealing with the same thing just over a week ago. That his chest, where there is now a neat 3-inch scar, was once left open for two days and covered only by a thin screen, as the doctors waited for the post-surgery swelling to go down. We didn’t take any pictures of Raphael like this. Instead, we just have it in our memory. It’s more than enough to remind us of what our son’s body is capable of and that as his parents, what we might consider nerve-wracking to see in another child, will be something we simply accept and figure out as best we can when it happens to our own. Because it’ll be what our child needs us to do.
To the right of his bed, attached to the second electrical unit, is the screen reading his vital stats and his automated medication and food dispensers. Each dispenser is programmed to drip out a certain amount from a syringe over a specified amount of time. Medications all go into the vein in his hand and food goes into his NG tube, from his nose to his gut. Just three days ago, because of the high oxygen flow he was on, he had an NJ tube that bypassed his stomach altogether and took food straight to the small intestine. The other lines coming from Raphael are his arterial line, used for drawing blood and to measure his blood pressure, the lines from his body sensors detecting his O2 levels, heart rate and respiratory rate, and his cuff taking regular external reads of his blood pressure. The only one of these lines that was ever a concern for us was the arterial line, going into his femoral artery. For the first couple of days, the line was messing with the blood flow to his leg, turning it a grayish purplish color. They started him on a heparin drip which cleared things up, but when they started him on Ativan to wean him off the Fentanyl, it caused a dangerous drop in his blood pressure. This, of course, has all been worked out, and today the arterial line was removed. After not being able to draw blood from the line last night, they used an ultrasound and detected a small blood clot, which they’re now treating with aspirin. Like everything else, they just take it as it comes.
The bed that he’s on is a white metal crib, with a crank at the end to raise a part of it to an incline. It’s his second bed here. The previous one was considerably more high-tech. A line connected from the top of the unit to his chest tracked his temperature and a heating lamp above the bed was used when he had trouble maintaining his temperature. He was held in by four plexiglass walls, each of which could be folded down for when we and his nurses wanted or needed to get closer to him. The switch to the low tech bed/crib was a sign of his progress. It meant that he would be headed to the stepdown unit one day soon. And today was that day. I’ll have more to say about this unit, the waiting areas, and the rest of the hospital in the days to come. Up until today, our days were primarily spent in the CICU.
