I swear that my son has spent a significant chunk of the last month screaming and I am ready to join him.
I am pretty sure he is in pain. I say that to every health professional we talk to these days. And since he has had two recent admissions to the ICU via the emergency room lately I have talked to a number of health professionals. But once we again we return to the age-old problem of pain and profound disability. Because my son is non-verbal and profoundly developmentally delayed he cannot communicate the details of his pain. He can only tell us he is in pain. Unfortunately, assertive pain relief is often not offered until the medical team understands the pain – regardless of how long that might take and how profound his suffering. The fact that during the last month what I believe is pain has become so severe for my son that he can become medically unstable isn’t enough justification to manage his discomfort it seems.
When Matthew’s pain becomes severe he cannot coordinate his breathing. This poorly coordinated breathing, we are learning, seems to lead to (very) poor oxygenation levels which itself is a problem. By the time we get to the emergency room he is usually so unstable that the team needs to respond this evident medical instability and difficulty breathing. Fair enough. The problem, however, is that the reason for that medical instability, meaning suspected pain, becomes lost in the acute moment even though I keep trying to bring the team back to that issue. Late last week Matthew was, once again, rushed to the emergency room with difficulty breathing and unfortunately this time was no different. Matthew is back on antibiotics to treat a pneumonia I confidently told the both the ER and ICU doctor wasn’t the source of his breathing difficulties. We’ve done this before and I am pretty good at reading Matthew’s sypmtoms. And sure enough, his lungs are fine once objectively examined. Apparently, when it comes to my own kid, I can be as accurate as an x-ray!
What I keep telling the team, and only now do they seem to be hearing me (after two ER visits and corresponding ICU admissions), is that Matthew’s acute presentation is the result of an evolution over several hours, or days, of irritability and suspected pain. We need to, ideally, find the source of the pain and irritability and manage the situation. At the very least it would be nice if we could, when necessary, treat the pain to prevent the complex spiral that can then ensue and lead to the medical instability. Because once he’s unstable and at the hospital the situation gets very complicated and the initial reason for his instability gets lost in the acute management of his condition. During these acute episodes drugs, sedation, and interventions are thrown into the mix that themselves create problems. I worry these interventions begin to obscure the initial source of discomfort we are trying to identify. Is Matthew upset now because he has GI pain of some unknown source, or because the antibiotic he is on, and really didn’t need, is causing severe diarrhoea and general stomach upset? The source of his initial pain response gets lost in this explosion of medical intervention that is happening to Matthew’s already very complicated body and medical status. There are times when I want to remind the team that they labeled my son “complex care”, because he is complicated! Let’s stop and think a little more deeply about the issue.
So we now have a situation that when Matthew starts spiralling into this pain response we are doing everything we can humanly do to avoid going to hospital. The people at our regional children’s hospital are nice and all that, but I really don’t like the team enough to want to hang out with them regularly. But more importantly, trips to the ER and hospital add a needless layer of complexity and fragility to an already very complicated and fragile kid.
I feel like I am caught between a rock and a hard spot. Something is wrong. Perhaps very wrong and the system, once again, is ill equipped to adequately assess and respond to a child with this level of complexity. It is further complicated by the fact that some medical professionals struggle to hear the voice and assessment of an experienced parent who knows their child. So I am left with the impossible decision of deciding whether a trip to the hospital will help, or hinder, my already very medically fragile child. These brutally stressful conundrums, with very real life and death consequences, are the stuff of life for many of us who care for medically complex children.
My kid is very, very unhappy some days. When Matthew is irritable we cannot care for him. It takes three people to change a brief or give him medication, and even then someone might get inadvertently hit. As his mother I am forced to stand and bear witness to my son’s pain and suffering, knowing the medical community not only may not address his pain, but that they might complicate finding and treating it. It is an endless source of suffering for both Matthew and me. That whole porous boundary thing. It is an unsustainable situation that seems to have no immediate answer.
Fang is awake. The cage is still locked. But, she is awake.