Warning: this is going to get personal.
I should be in bed. It is 1:30 AM on Saturday morning, a little over 12 hours since we took our disabled daughter to the ER.
I’ll get to bed soon. But just now, I felt the need to spend a little time in her room.
Hannah’s room is always noisy. Some noise comes from the TV the nurses keep on all the time. Most comes from various pieces of medical equipment. An oxygen concentrator. A pulse oximeter keeping up a steady beat, or else a not-so-steady beat that can send us to the hospital. A suction machine for clearing her trach so she doesn’t drown in her own fluids. A nebulizer for delivering meds. A ventilator for those times none of the other things together can help her breathe on her own. A window air conditioner, necessary to control the heat generated by all that equipment and more, impossible for the central HVAC to overcome.
Noisy as it typically is, there are things you don’t hear. You don’t hear the music you expect in the room of a teenager or young adult. You don’t hear the chatter and giggles you expect on cell phone calls with friends. You don’t hear arguments over staying out too late or reminders of, “I’m not a child anymore!”
None of the medical equipment runs now, shut down just as we loaded her into her wheelchair, the wheelchair into the handicap van along with oxygen tanks, portable suction machine, and backup ventilator. I heard a relatively low-level hum, realized the window AC still ran and the TV still mumbled to itself like a deranged relative in the corner. I turned those and the lamp off.
It is so dark, so quiet.
Tonight she lies in the Intensive Care Unit at East Tennessee Children’s Hospital. Doctors still have no certainty about her condition, or even what the actual cause is. We await the results of tests. Multiple nurses watch over her, monitoring pulse, oxygen levels, respiration rates, blood pressure, temperature. Any variation sets off an alarm, and people come running, gathering around her like gamblers at a casino table. The hospital has its own sound, quieter but more intense.
We will get some sleep, grab a shower, and return. We’ll take some things to pass the time—I’ll have my books and laptop, my wife her crochet. This is Hannah’s thirty-fifth or so hospitalization, although I’m uncertain of the actual number. We have lost count. It’s routine in away, but this time has a different feel to it. The time-passing accoutrements will often sit on a table unnoticed as we watch the quiet figure in the fancy bed and contemplate the shifting numbers on the monitor representing so many vital functions. We will wait to hear the results of the tests, and we’ll latch onto the slightest change of color in her face, the merest nuance of vocal inflection as the nurses discuss their mystical arts.
Our best hope is that this will take a few days, and then we will bring her home to our routine of noisy room and noisy care. I really don’t want that room to stay quiet.
Thank you for sharing. Praying!
This is raw and vulnerable. I came in here after seeing your updated post on Hannah. I could feel your emotions as you described your home without Hannah and her care team there.
Rest as well as you can under the circumstances and know you are seen. You respond to the call each day to show up for your daughter in ways most of the world will ever fully comprehend.