About Emily

Wednesday, August 3, 2016

Time to Take a Chill Pill

A picture of a pill that says in all capital letters, "CHILL".

Peetee will be one-month old in less than a week! It’s hard to believe that I’ve been peeing free for almost thirty days and that I’ll have years of this liberation to come. I’ve been drinking 60-80 ounces of water per day, which is the most hydrated I’ve ever been in my 39 years of life. Pee math isn’t exactly a distant memory, but it’s hard to imagine only drinking around 20 ounces per day again. While I don’t exactly look like a new woman, I feel like one in many ways. My skin is softer, brighter, and clearer; I’m not as bloated; and my energy levels are higher. There’s also something satisfying about knowing that you’re flushing your system with pure water every few hours. These are the positives that immediately come to mind about this experience, not to say that it’s been a totally 100% positive experience. Peetee and I have had a few bad days.

Again, here come the newborn metaphors. Like with any new “child,” some days your kid is on-point and other days you’re looking for the nearest fire station to drop him off at. Every morning when I wake up with Peetee, I assess how he looks, which means that before I clothe him in his 4x4 drain gauze pad, I clean and observe the stoma or hole that Peetee the SPC tube comes out of. My stoma is about the size of another belly button, and because it has a tube through it that taps my bladder like a keg, it will always be open. It's kind of like a larger version of a bellybutton piercing, but way less 1993.

Some days Peetee wakes up on the right side of the stoma, and some days he wakes up a hot mess. There’s really no way to predict his moods or why he’s good some days and not so good other days. My lack of experience as a “SPC mom” doesn’t help either. When Peetee acts up, I panic and tend to overreact. I’ll call all of my SPC mother friends and try to get their advice. While I love that I have a large group of friends who have been through this experience, every mom has different advice for me and that can get confusing.

A picture of a Neosporin tube.
A picture of a Hydrogen Peroxide bottle.

For instance, one day Peetee looked a bit red and angry. I took a picture of him and texted it over to one of my mom friends. She said to put hydrogen peroxide on him occasionally when he acts up. Then, I showed that same picture to another friend and she said, “Nooooooooo - do not EVER put hydrogen peroxide on Peetee!” I guess hydrogen peroxide, according to this second mom is no longer the recommended course of action for wound care. This exact same debate occurred with using a topical antibiotic ointment like Neosporin. One mom tells me that Peetee will like Neosporin, another mom says that she’ll call SPC Protective Services on me if I use it.

I know, you’re probably thinking, “What does her doctor say?” Well, this is where it gets even more challenging. Dr. Bruce, I’ve gotta tell ya, is a pretty busy guy. During the first couple of weeks of Peetee’s life, I was calling his office and speaking to the triage nurse on call every few days. While the nurse seemed like a nice lady, she also made me feel like I was completely neurotic. Her answers, I’ve learned, directly mirror Dr. Bruce’s; they are both of the opinion that Peetee is much more resilient than I give him credit for. My doctor and his nurse are basically like grandparents that spoil your kid rotten. Peetee can do no wrong. Peetee can stay up all night and eat cookies for every single meal of the day. Peetee falls down and skins his knees, Grandpa Bruce spits onto his hand and rubs the wound clean. According to my doctor, I could douse Peetee in gasoline and he’ll be just fine. A little gasoline is good for the kid, it helps him toughen up!

So like any overprotective mother who thinks her parents obviously forgot what newborn care taking is about, I have spent far too many hours on Web MD and in the pharmacy buying supplies to try to make Peetee happy during his grumpy moments. I rushed him to the RediClinic one morning when Dr. Bruce was on vacation because I thought he was infected. The RediClinic is basically like the daycare room at IKEA. While they can easily handle most people’s common issues, children like Peetee are not their forte. They took some urine out of the bag that Peetee's draining into, said I had a ton of bacteria, and prescribed me a ten-day course of antibiotics. As it turns out, I learned from Dr. Bruce that testing urine that doesn't come straight from the source is probably the only solid no-no he's offered. If I do test urine that comes out of a bag that is washed out over and over again, it's undoubtedly going produce a tainted sample and read as positive for a urinary tract infection (UTI).

A picture of the supplies I bought to take care of Peetee. As you can see, they take up the entire bed.
A picture of the supplies I actually use (10% of what I bought).

By far, the hardest part about being a new SPC mom is dealing with the unknowns and forcing yourself to stop being a helicopter parent. I finally got this message this Monday, when after a rough morning with Peetee, who was especially grumpy, I called into Dr. Bruce's office and asked for my monthly follow-up appointment to be moved up a week. I drove to the office worried I'd hear the worst news - that I'd have to contend with constant UTIs that would require antibiotics, or a badly infected Peetee, which would turn gangrenous and cause me to have to have my entire lower half amputated.

I should note that the follow-up appointment included my first Peetee change. On a monthly basis for the rest of my life, I will need to get a fresh tube put in. This is a quick process that involves:

1. Deflating a balloon that is filled with saline solution that blocks the hole and keeps Peetee in place.
2. Pulling out the tube.
3. Putting a new tube in and filling the new balloon that's attached to the tube with saline.

An experienced nurse, like Dr. Bruce's nurse, can do the change in a total of 120 seconds. Many people learn how to do it and just teach their personal care attendants (PCAs) or family members to do the change. Since I'm a new mom, I've decided to leave it to the professionals until I become more experienced.

Going in for this initial follow-up, I was convinced that Dr. Bruce was going to come in, look at Peetee, and tell me that I needed to prepare to lose my torso. Thankfully, quite the opposite occurred. Here are my take-aways:

1. He said that Peetee looked well cared for and clean.
2. He said that Peetee was an irritated baby, but not infected and/or probably not ever infected.
3. He's ordering a home health nurse to come out to my house and do the changes.
4. He wants to see me in four months and by then, Peetee should be well established and much happier.
5. He, in more or less words, told me that I needed to take a chill pill.

Oh and by the way, the change went really well. Peetee likes his new body, but he stung and burned a little in the two minutes that he was getting outfitted by the nurse. I took a couple of Aleve before the appointment and I'm not even sure I needed that.

Since leaving the doctor's office on Monday and taking my chill pill, Peetee and I have had two really great days. I've decided to take a more hands-off approach and only have my PCAs tell me if Peetee looks raging angry rather than just a bit ornery and I've cut down on my doting significantly. When Peetee cries, rather than immediately jump into crisis mode, I let him bitch for a bit and see if he calms down. He has calmed down every time.

In the meantime, I pee. I empty my bag about six times a day, and again, I cannot express how awesome it is to go to the bathroom all by myself. I also cannot express how nice it is to not have to constantly monitor my fluid intake and hold my need to use the restroom throughout the day, which was very distracting. I can plan a day out and not have to rush home to meet a PCA. I can drink a half bottle of wine with my friend Doris and realize that I have the alcohol tolerance of a teenager. And the coolest thing ever - I can urinate in the bushes when there's no restroom around!


  1. I just love the narrative you have created about this experience. It would be such a valuable "decision-making tool" for other women. Please call me (713-701-5217) whenever you have a chance so we can talk some more about this.– Peg

  2. Thank you for sharing your experience with your SPC! I also recently got a SPC myself. Do you experience any leakage with the flip-flo valve? Sometimes there are still small droplets of pee stuck to the inside of the valve, which I find annoying because it sometimes drips on to my clothes. Also, do you strap the SPC to your leg or tuck it into your waistband? I've been trying to figure out the best place to put the SPC so it can easily be taken out so I can do my business. Thanks!

    1. Any time I open or close the flip-flo I take a piece of toilet paper and dab it again and again (like shaking off a penis) on the paper until it's dry and no pee comes out. My SPC tube is connected to a 32 ounce bag that I drop in a black purse that's connected to my wheelchair armrest. While I never thought I'd be a "bag lady", I have found it to work quite well for me and no one ever notices it because it's in the black purse and the tube is covered with a cloth headband that has been cut. I slide the headband over the tube, attach the bag, and wah-lah. Hope this info helps!