Our poor little Gwendolyn 🙁 Last night we were up half the night with her as she was writhing inconsolably in pain from constipation – sorry about the unsavory topic, but it's reality. She doesn't have a temperature, but her heart rate is very high – last night her heart rate was bouncing from 150-170 and today she is between 140-160 (she's normally in the 120's during the day and low 100's at night). She is most obviously just plain uncomfortable.
Given that SMA impacts the ability of the brain to control the muscles and therefore effects muscle development, battling constipation is a normal part of the disease. Although there are the obvious extreme discomforts associated with constipation, the most worrisome related to Gwendolyn is its impact on her breathing. Since she is unable to physically expand her chest wall, she breathes from her belly – she's a “belly breather”. It's hard enough for her to breathe on a normal empty stomache, but when she becomes bloated or constipated it becomes infinitely more uncomfortable and difficult for her to breathe.
To date, we've been fortunate enough to control Gwendolyn's constipation with relatively small daily doses of prune juice. A few weeks ago Gwendolyn had a bout of diarrhea and we've had a hard time getting her back to “normal” ever since.
As of this morning it's been five days since her last bowel movement. We normally start worrying at three days and sound the alarms at four days. We've been unleashing the prune juice arsenal for the last two days and we've tried probiotics, additional water, and massage – nothing has worked yet. Today we'll be considering alternatives with her doctor to get her to go today.
She is no doubt uncomfortable and we can tell that she is trying, with all her might, to go. It's very difficult to watch her struggling…in pain…knowing that she wants to go…needs to go…but just can't physically do it.
Hopefully for Gwendolyn, with a little help, today will be the day…