I am running the ragged edge of exhaustion. James has been sick with a cold for days. He’s been handling it well overall, but it is an exhausting cycle of nebulizing, coupaging, suctioning, administering medications, monitoring him for throwing up/gagging as a result of his secretions, and changing his position when it happens and his oxygen saturation drops. I’ve been up at 330am and 730am nightly, doing his nebulization and chest physiotherapy 3 nights in a row. This is on top of caring for the girls and trying to care for myself (i.e. pumping every 4 hours). I haven’t slept more than 3 hours at a stretch in 72 hours.
Once again, the laundry has accumulated, and the house is sliding toward disarray.
And of course, to add to the immense exhaustion, there is the constant stress that James will die. In the past few days, there have been a slew of trisomy 18 losses. Each one highlights James’s fragility and the sudden nature in which death can come for these children. Some have died within a matter of hours.
I slept fitfully last night because although James seemed to be turning the corner on the cold yesterday, last night, his oxygen saturation levels stayed low despite increasing his oxygen to an all-time high (at home) of 6L/min. He wasn’t coughing, didn’t seem excessively snotty, but he continued to need more oxygen to maintain only fair oxygenation levels.
Of course, I ask myself- is this the cold, or is his heart being taxed too much? Is he slowly moving toward going into heart failure again? Should we take him to the hospital? Who will watch the kids until our parents can get here? What about my scheduled shifts on Friday, Saturday, and Sunday? Is he going to die soon? Am I being negligent not taking him in right this second?
There is a fine balance with what I know in my heart will be a terminal disease for him. There is a line I walk between taking him to the hospital to be poked and jabbed and prodded and exposed to other diseases and managing him at home as much as possible. His heart is unrepaired and is highly likely to stay that way now that we know about the cardiomyopathy. It will fail him.
I want to scream. I want to cry. I want to throw something at the wall and watch it shatter. Most days, I move through as if I’m in a fog – sometimes, I have no idea what day it is, or what I really spent the day doing. I feel like I’m suspended in time, waiting. The tightness in my chest never really subsides. I am hanging by a thread right now, and it’s a very, very thin and frayed thread.