"My head grew heavy and my sight grew dim.
I had to stop for the night."
The Eagles; "Hotel California" (1976)
We've researched why it is that pain seems to amplify itself overnight...there doesn't seem to be a definitive answer. Some speak of the fact that we tend to breathe inhale the carbon dioxide we expel while we exhale thereby increasing the size of cells in the body...which can affect pain receptor behaviors. Others talk about the fact that one is alone, in the dark, while everything is still and quiet...the focus easily shifts to the pain which is the only stimuli. Still others postulate that daily activity tires the body out, thereby making pain more pronounced during the night. Theories abound.
I had to stop for the night."
The Eagles; "Hotel California" (1976)
We've researched why it is that pain seems to amplify itself overnight...there doesn't seem to be a definitive answer. Some speak of the fact that we tend to breathe inhale the carbon dioxide we expel while we exhale thereby increasing the size of cells in the body...which can affect pain receptor behaviors. Others talk about the fact that one is alone, in the dark, while everything is still and quiet...the focus easily shifts to the pain which is the only stimuli. Still others postulate that daily activity tires the body out, thereby making pain more pronounced during the night. Theories abound.
Whatever the reason it is a reality in our world these days (or nights to be exact). Ella's pain is exacerbated overnight. Of the 8 nights we've been home we have had two uneventful and 6 horrific nights. We've systematically changed only one variable at a time to pinpoint what works best to alleviate her pain and allow her (and us) to sleep. It's a tricky path to traverse as medications have side affects that we must keep in mind, SMA has "protocols for care" that we must follow, and communication about pain with a tired, medicated, 5-year old is as difficult as it sounds.
Our nights are filled with medication reminders sounding their alarms via our cell phone apps. They call for action every 2-3 hours as Ella is currently on 5 medications to manage pain and allow for maximum comfort. Doses are small because she is small. A balancing act of rotating medications takes place in order to maximize their intended function while maintaining her homeostasis. In the meantime, "our heads grow heavy and our sight grows dim".
While dressing one of her incision sites we did notice that while one of the incisions is clean the surrounding skin is chaffed, raw, and beet red. This was discovered a few days ago and since then we have been diligent in cleaning it gently. We're hopeful that any discomfort caused by this irritation is alleviated by our cleansing procedures. Ella tolerates our make-shift nursing care well. She does her best to let us know what's happening to her and always has a smile, a hug, and a kiss for us.
Sudden screams of pain in the night wake us in-between medication reminders. Sometimes it's easier (and seemingly more efficient) to simply stay awake after quelling her episodes until the next medication round. Nights are long and morning rolls in despite our lack of sleep. We do the best we can of alternating nightly care and afternoon naps. We still have the daily activities of life that need tending to and through the generous, caring help of many we are able to keep our young household of five running.
We'll get through this, as my late mother used to say, "This, too, shall pass."
