Facing the Monsters Under the Bed: Pain

It may seem like my mandate of being a lightkeeper means that I should try to keep everything light and upbeat. In my everyday life, that is true, but I had a good friend remind me this week that sometimes you have to share the dark for others to understand your light. I had just told her about how I had rewritten my last post on injury to gloss over some off the harder moments, but she was right. Tonight I will share a glimpse in the dark and introduce you to one of the monsters under my bed.

William has many amazing people on his care team including an incredible group of individuals known as the Qola team. (Qola is short for Quality of Life and Advanced Care, aka what used to be known as palliative care, but now encompases those who have medical conditions that can affect their quality of life.) They have been part of our care from very early on and I have watched this group helping older children as they continue on their journey, and the other side of the coin, support families and their children as that journey comes to an end (one of whom we all wished a very happy second birthday in her heavenly home just yesterday).

For William they have been able to step back and let us know they are there for us when we need them though we occasionally have check-ins. We had a follow up with them just before this pandemic took over our planet, and we discussed many things, in particular how to know if William is in pain and the actual use of one of his medications, gabapentin. I discovered that where my understanding of the gabapentin was that it relaxed his muscles and that was why when he had it his arms and hands relaxed, I was wrong. It is common with children who have HIE, (a brain injury due to lack of blood and oxygen to the brain) to live with neuropathic pain. Gabapentin, while it can also reduce the risk of seizures, is in essence helping relieve the neuropathic pain and that is why he relaxes.

They asked me to fill out a pediatric pain profile. I readily printed off this very lengthy document, put his name boldly on the front, read through the whole thing, showed it to my husband, to the nurses, to anyone who wanted to see it and then I put it face down without a mark in it and did not look at it for weeks. Maybe I just couldn't remember how he dealt with pain and that was why I didn't recognize any of these symptoms (good or bad) as outlined in the document? Not so easy.

My boy proved you don't need to be able to walk and talk to get into trouble and got injured twice in the span of a week - once with a cut upper lip and a gash on his eyelid that needed to be stitched. The whole time the words in the pain document flashed through my mind.

Is my child cheerful? define cheerful. Does he moan/groan/whimper? doesn't make a sound. Reluctant to eat? doesn't have a choice. Tenses/stiffens or spasms? let's talk about cerebral palsy and dystonia!

So, here is where the darkness tries to take over. I watch my son bust open his lip and not show any signs of distress other than tears in his eyes. I watch my son bust open his eyelid and fall asleep a few moments later, completely relaxed. I hold my son as the doctor pulls a needle through his eyelid to stitch up the gash and nothing - no flicker in his heart rate, no pulling away, no reaction. We all know it would hurt. Even though, as the Qola doc reassured me half of the drama of kids getting stitches is the anxiety, we know, especially you mom's out there who have had to have stitches in places where the sun shouldn't? shine - it still hurts. So if that hurt and he doesn't react, when he is getting his RSV shots in both legs and he is pulling away - every month of flu season, how much pain must that cause?! Is it possible that my son has just become so used to pain he doesn't even react to it anymore?

I am not going to take you further down this path. I am sure you can catch a glimpse of it there. There is light. We have amazing doctors. His Complex Care team has agreed to trial a medication for his secretions as we are not going in for botox, on my suggestion and with us monitoring (which is huge) and his Qola team has agreed to do a five week trial to rule out neuropathic pain for William. The doctor says he is quite positive he is very comfortable and we know from his amazing smirk and kissing mimicking that he is happy, now we will be able to be sure, and try to fit in one more part of the crazy jigsaw puzzle that is my little warrior.