For a few months after Alexander’s first open heart surgery I had trouble sleeping after we got home. This was different from the exhaustion all parents go through while in the hospital. It wasn’t directly caused by the fear and uncertainty of a complicated recovery, it was something different, and something I’ve not really discussed openly before.
I could hear beeping.
It wasn’t all the time, but in the moments between awake and asleep, just as I was losing consciousness, it would come. It took me a while to sort out what I was hearing, since there’s nothing in our home that makes that sound. It was a faint, low, rhythmic beeping, familiar and urgent. It sounded distant though, like it was coming from another room. It would snap me awake – and then it would go away. Typically, I’d get out of bed, go check on Alexander, and then come back and try to get to sleep. Sometimes I’d just go downstairs and put the TV on and doze on the couch.
When Alex is in the hospital, the bedside monitor is my nemesis. I’ve stared at it for hours. If you’ve ever spent any time in the hospital, or watched one of those TV medical dramas, then you know the machine I’m talking about. If you’ve been fortunate enough to avoid either, I’ll do my best to describe it for you. Beside each patient is a bedside monitor. It’s like a little computer screen that’s connected to the patient by a series of wires and probes, and the screen displays an impressive range of information about the patient. Heart rate, heart rhythm, blood pressure, blood oxygenation, respiratory rate, and some other numbers and waves that I don’t understand.
Through several different conversations with nurses at SickKids, I’ve been able to piece together how the monitor communicates with the medical staff. Specific to each patient, an expected range is input into the machine for each attribute being monitored. If the patient hits the high or the low range limit, the machine pages the nurse to come take a look. Each patient’s monitor even has a remote visual display down the hall at the nurses’ station as well. Sometimes there’s something wrong, and the nurse jumps into action, adjusting oxygen levels for example. Often there’s nothing wrong, and the nurse re-positions the patient in their bed, re-applies a wire that’s come loose, or puts a dislodged oxygen monitor back on a toe or finger.
The bedside monitor is more “vocal” in the patient’s room. If the high or low range limit is reached, a warning alarm is initiated by the machine. It’s a series of low, rhythmic beeps, possibly in repeating sets of three, I can’t remember. When the nurse arrives, they usually take a look at the machine, take a closer look at the patient, turn off the alarm on the monitor, and take whatever action is necessary. Alexander’s recovery from his Glenn/Coles surgery was marked by “persistent desaturations”. This means that he had a very difficult time maintaining a suitable amount of oxygen in his blood. Normal blood oxygen is around 100 on the monitor for a healthy person. On our worst day, Alex was down in the 50’s. Usually he was between 65-75 (with an oxygen hood or nasal prongs), but the truth is he was all over the place. Just for comparison, he was mid 90’s at his last cardiology appointment, which is great for him. Anyway, for a period of several days, sometimes multiple times per hour, Alex would fall below the range limit on the monitor and the alarm would sound. I became so focussed on his machine that I started to recognize the range limits that would trigger the alarm. If the low limit was set to 70 I would sit with my head in my hands staring at a reading of 71 just waiting for it to drop to 70 and set off the alarm. It was pretty high anxiety. The closest feeling I can compare it to is walking through a dark room knowing someone is going to jump out at you, but not knowing when. It went on like this for a long time. When Alex started to improve, the nurses actually began silencing the alarm and turning the monitor display off in the room. It had become that obvious to them that I was having a hard time. They could watch Alex’s vitals from the nursing station, and of course if anything went wrong, the monitor would still quietly page them.
To this day, that little screen immediately becomes my focus whenever Alex spends time in the hospital. Alex had a bout of tachycardia after his last operation, and I watched his heart rate spike from 90 to over 200 in about 10 seconds in real time on the bedside monitor. After that, I substituted my fear of the low blood oxygenation limit alarm with a new fear of the high heart rate limit alarm. Once again, in the days that followed the machine was turned towards the door, and the in-room alarms were silenced.
I feel ashamed writing about this; I’m afraid it sounds foolish. I’m also still afraid of the monitor. I don’t hear it in my sleep any more, but in those tense moments, the fear is very real. I’ve learned to cope with it, and not let it consume me on those rare occasions he’s hooked up. After all, the monitor is a critical ally in his recovery. I just hate that damn alarm.
Recently, I had the privilege of helping facilitate a discussion with a group of other heart dads. One of the topics that came up was how we deal with anxiety, during and after these difficult times. One father spoke about a fear of his mobile phone. He was called at work one time because of a serious emergency with his heart baby, and now whenever his phone rings during the day, he’s immediately thrown back into that moment. I can relate to that one as well. I think it was very beneficial for most of us to be able to talk about it with other dads who have been there. Anxiety can be a difficult thing to come to terms with. Some people get angry, some suffer in silence. One or two try to work it out in a blog. I think most push it down as far as they can and try not think about it. I’m not sure there’s a right answer, but I think it’s important to at least acknowledge it, and to acknowledge that many parents leave the hospital with scars too.
