*Warning: Not for the faint of heart due to graphic medical language in 1st paragraph.
*Well, we’ve had to get creative. After my child slept through a gastrointestinal bleed (sorry but there’s no other way to say this), after we had our morning rush to the E.R. we decided there must be a way to monitor her at night. We thought of using one of those hospital monitors that read out blood pressure, heart rate, etc. but by the time her vital signs dropped we’ve lost precious time. She’d already become what they call hemodynamically unstable after and had rescue steroids, dopamine, transfusions, and ended up in ICU. So we thought of using a potty alarm but (again no other way to say this), she’s a girl so that would only work for 3 weeks out of 4. So we did this anyway because 75% of the time is better than nothing. Then I thought hey, what about baby monitors? Especially the kind that are so sensitive that breathing can be heard? This would work because, just trust me, we’d hear it.
Ok I’m done with the gross medical stuff, onto the unexpected benefits.
So we got the baby monitor which also lights up with sound. If you remember from last month, my child is autistic and talks herself to sleep. So I’m thinking, great now I get to hear it in stereo and I don’t really need to hear it on the monitor because I can sort of hear her voice through the wall. But honestly after spending the past year and a half separated from her at night while she was hospitalized multiple times, I’ve actually turned the monitor on early because hearing her while I’m in bed at night is actually comforting because I know she’s right there, home, in her room.
Anyway, one night I got an unexpected surprise. One of the things she does is imitate other people. So I’m hearing her do what sounds like an interview. Her sweet voice asks “So what’s it like being the lead guitarist of Black Veil Brides (her fave band)?” And this somewhat low, nasally, almost teen boy voice responds “Well, uh, it’s like really cool!” I’ve heard her echo lines from videos but nothing ever like this. And the conversation goes back and forth and it’s like there’s TWO people in the other room, I’m laughing so hard I’ve got tears running down my face which I put in the pillow because I don’t want her to hear me laughing. I actually had to turn off the monitor for a few minutes to catch my breath because I couldn’t stop laughing. And I’m thinking “Thanks Steph for a good laugh, I really needed that.”
So in something as serious as monitoring a possibly life-threatening condition came such joy. Silver linings.
I remember when she was born with one small kidney, respiratory distress, and not expected to make it. We were literally in survival mode the first three years. But it wasn’t until she was diagnosed with autism at age 7 that my world came crashing down. People were understanding about kidney disease but with autism it was like they’d get the garlic out to repel a vampire. Now that we knew she’d survive, I started thinking about her quality of life with autism. But still later, I started thinking about how I felt when she had her kidney transplant-how scared I was. I mean, this is an organ, not just surgery. I’m in the waiting room with other families and one child is getting a HEART transplant. I’m thinking “Geez, I’m glad it’s just a kidney” and can’t imagine how the other family is dealing. Even later, when my child is so ill with gastrointestinal issues and they start talking about removing her colon and I’m wondering if things can get any worse (never wonder this by the way), this time I’m in the waiting room with another family going through the same GI issues but their child also has a brain tumor. And again I’m thinking “Wow and here I was feeling sorry for myself dealing with a kidney transplant and GI issues and they’re handling a true life and death situation”. And I wonder how they do it.
It’s all a matter of perspective. When she was born, I was worried about kidney disease. Then with the new diagnosis, it flipped to autism. Until her kidney failed, then it switched back to the transplant. Until she had the GI issues that hospitalized her 8 times (so far.) So basically it’s what’s happening at the time.
So just be careful. You might hear something on a baby monitor that puts it all into new perspective.
YOU Remember that families are the experts on their child as they are with them 24/7. You’re stronger than you think!
Lauren Agoratus is a parent/advocate who serves as the NJ Coordinator for Family Voices, a national network that works to “keep families at the center of children’s healthcare” at www.familyvoices.org or FB www.facebook.com/pages/Family-Voices-Inc-National/137783182902269. She also serves as NJ representative supporting caregivers across the lifespan for the Caregiver Action Network (formerly National Family Caregivers Association) in a volunteer capacity at http://caregiveraction.org/ or FB www.facebook.com/CaregiverActionNetwork.