Stephen’s Journey – November, A Day in the Life

By Lindsey S. Guest Blogger

Stephen and his aforementioned monkey

A reminder that more of Lindsey’s writing and Stephen’s story can be found here.

Now that you’ve had an introduction to my Superman, otherwise known as my son, Stephen, I thought it might be kind of interesting to see what a day in the life of a pediatric peritoneal dialysis patient looks like. I always find it fascinating to see how others live day-to-day, so I hope you also find this interesting.

Now that Stephen’s health is somewhat stable, our days are pretty normal (for a child with a chronic health condition). But for most of his first year of life, his health was so unstable that most weeks we had at least one emergency room visit, hospital admission or rush into dialysis clinic to prevent a trip to the hospital. To give you some perspective, last year we spent more than 150 days in the hospital. The hospital staff became a second family to us; we knew everyone by first name, and they knew us! Or better yet, I should say, they knew Stephen!

But now our calendar has weekly doctor appointments instead of daily, and it allows Stephen to be more of a normal toddler. And now that he started walking two weeks ago (he’s now 22 months old), he can go to the library for story time or play in the park and fit right in with the other kids his age.

Our day typically starts around 7:45 AM when Stephen wakes up yelling for Dadda or Momma, like all kids do, but instead of scooping him out of his crib, he has to stay there or close by to his crib because dialysis ends usually between 8 AM and 8:30 AM. Stephen’s dialysis regime is 12 hours a night, every single night.

Once he’s disconnected from dialysis and his overnight feed, we do all the typical morning routine things. Then around 9:00 AM we take a blood pressure reading and his first of three daytime tube feedings begin. Stephen does not eat anything by mouth; an aversion that has been caused by his kidney disease and what we’re told is “medical trauma,” so he receives all of his nutrition in the form of a specially formulated renal formula fortified with protein, phosphorus, and canola oil, through a feeding tube (g-tube). This also requires him to sit still for about 30 minutes during each feed, which is no easy task for a toddler!!

Following his feed, he receives his first round of medications for the day. Over the course of 12 hours, Stephen receives 12 different medications (10 orally, 2 injected) administered 20 different times. So at any given point in a day, he’s either just taken a medication, or about to take one. I’m not going to lie; it’s a lot! And it’s a full time job just keeping up with the medications! But we’ve pretty much gotten it down to a science, and I keep a daily log sheet in our kitchen, so everyone knows what time, and what medication to give.

After Stephen’s mid-day nap, he’ll get another feed that I refer to as “lunch” and then again 3-4 hours later (“dinner”) before bed.

A few times a week we also do a modified bath. Stephen cannot be submerged in a bathtub (since it’s not “clean”/chlorinated water), so we use a handheld shower and he can sit in the bathtub and play a little bit, which he now loves. After his bath we change and clean his peritoneal dialysis catheter site and dressing, take another blood pressure reading, and set-up his dialysis machine for the night.

Then around 8PM, he starts the “cleansing” all over again. It took about 9 months, but he’s now able to comfortably sleep through the night and we only get woken up a few times a week by the cycler or feeding pump alarms (usually because his catheter has gotten kinked as he rolls around at night). Although now that he’s a curious little guy, we have to tape his tubing and catheter like crazy so he can’t get them apart at night!

And then around 10:30 PM, we sneak into his room, give him his last set of medications for the day, start his overnight feeding, and kiss him good night one last time.

It’s not a “normal” routine by any means, but it’s our routine, and we’ve been able to figure out how to do it in the car, at doctor appointments, and even when we lost power. At some point when Stephen gets a transplant, this whole routine will change, but I have to say, I’m really going to miss sneaking into his room at night and seeing him all snuggled up with his (monkey) blanket sleeping away peacefully.

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