This decision has not come easily. We drenched it in prayer and even so, the path forward has not been uneventful. Yet here we are. Undergoing a major surgery at an out-of-state hospital in the midst of a global pandemic.
What else were we going to do this summer? All of our fun plans were canceled due to COVID-19.
This journey started, as it often does with medically fragile children, searching for answers from specialists. We met with multiple urologists and nephrologists in Austin and Houston, and although they agree on the diagnosis, Neurogenic Bladder, they all had differing opinions on how to treat it—from doing nothing to taking out Nathan's right atrophic kidney. Something was not sitting right with us, especially my husband who is a PA.
Our pediatrician at the time connected me to another mom whose child had similar issues to Nathan. She found a urologist who was then practicing in New York. We said we'd never travel for a specialist, but ultimately we did. Once we met him, we immediately entrusted our little boy to his care.
Dr. Alam's plan of care for Nathan is to cath him every three hours, with the exception of overnights. The round-the-clock cathing is basically our only option for preventing urine from refluxing back up into his kidneys and resolving the out-of-whack (that’s a medical term) pressure system in his bladder. With one kidney functioning at 11%, it became even more critical for us to make the effort to preserve the health of his good kidney.
Plus, Nathan was in pain. He was having horrific bladder spasms. They would peak around 3:00 pm every day and inevitably end with both of us crying together on the couch. I felt there was no way out. I couldn’t handle the pain Nathan was experiencing, but I wasn’t at all thrilled with the cathing plan either. I wrote about in An Unfinished Story About a Little Boys Bladder.
I can hardly believe we have been cathing Nathan in three-hour intervals for five years!
In the beginning, I didn’t think we could do it. It felt like too much of a sacrifice to our family freedoms. At the risk of sounding dramatic, I thought life as we knew it was over. We were already at the mercy of Nathan's tube feeds. Now we would have to arrange our family schedule around his caths. We needed to be at home, or near a clean potty every three hours, around the clock.
If anyone else is in a similar situation where things are looking dismal, I would say take a deep breath and believe in yourself to find workarounds. We did. We learned to cath Nathan early if we had plans that interfered with his schedule, we found out how long to push him in between caths, and sometimes we just stayed home and found other ways of having fun. I’ll be honest, we don't always make the three-hour mark. We give ourselves a healthy dose of grace when that happens. No one is perfect.
The most helpful improvement to managing Nathan's bladder is a closed cath system our home health nurse found. It changed our lives. It makes it super easy for us to cath Nathan on-the-go. All of the urine goes directly into a bag rather than us having to find a way to contain it and not spill it, in the car for example.
About a year ago we began talking about alternatives for caring for Nathan’s bladder and kidneys. He is becoming bigger, more mobile, and certainly more opinionated. Every medical procedure we give him throughout the day—from G-tube feeds to cathing—was cramping his style. At times, it feels like a wrestling match to get him to comply.
Enter, Malone/Mitrofanoff surgery summer of 2020. This year has been a major downer between COVID-19 and the racial unrest in our country, why not add a personal trial to the mix? We decided to go for it. We drove 24-hours from Texas to South Carolina for this surgery. Dr. Alam has since switched to the MUSC hospital system in Charleston, not far from my parent’s home. This trip is a beach vacation for my oldest, and major reconstructive surgery for my youngest. (#lifesnotfair)
After a two-day inpatient bowel cleanout that totally stunk (pun intended), Nathan went to the OR for a Malone/Mitrofanoff procedure, which is a medical way of saying he had a bladder and bowel reconstruction. This surgery will allow us to better cath him and flush his colon. Hopefully, further preserving the kidney function of his one good kidney.
Here we are a week out from surgery and Nathan is doing beautifully.
In addition to having surgery a week ago, Nathan turned seven. When Mac turned seven he got a bike. When Nathan turned seven he got surgery. (#lifesnotfair) One is obviously more fun, but the other way more expensive.
A New Journey
In the Bible seven is the number of completion. To me, it marks the end of a season. Here we are starting something new. A friend texted me to say that she was praying for our new journey. And indeed it is. I’m hopeful we will have some big gains.
For Nathan, more privacy with cathing. (The Mitrofanoff will allow us to cath him without taking off his pants.)
For his caregivers, less lifting and manipulating to get a catheter into his bladder.
The surgery will improve our quality of life. But mostly, we hope to have a healthy boy.
There are no easy wins with Nathan due to his syndrome. This has been hard-earned and we are not out of the woods. Yet here I am sitting in a sea of gratitude in the midst of 2020. We have nothing if not hope, especially hope in Christ, who loves Nathan even more than we do.
Thoughts about Hospitalization in the Midst of a Pandemic
For those of you who are planning for a hospitalization (of any sort) here are my thoughts in light of coronavirus:
Find out if the hospital you are planning to use is deemed a “clean hospital.” Most cities have a specific hospital they are sending COVID patients to which, not surprisingly, is called a “dirty hospital.”
If you have an autoimmune deficiency or are medically fragile, ask for a negative pressure room. These rooms are designed to constantly pull and filter air out of the room. They are often saved for sick patients, and people with COVID-19, but if you have the option for its use, I would take it.
Wear a mask when you are outside of the patient room at all times. It’s okay to ask the staff who forget and come into your room unmasked to put one on. Even doctors forget. We are all tired of the masks but if it’s for your safety or your child’s safety, it’s worth requesting someone to mask up.
Wearing a mask protects others around you. It does not protect yourself. In other words, be sure you are around people who are masked. If you are in a situation requiring hospitalization, you don’t want to expose yourself to any viruses, particularly COVID. So again, request people put on masks.
No amount of hand sanitizer is too much. Most hospitals have hand sanitizer stations throughout, especially at double doors. Use it. I think my husband has made a personal goal to pump every bottle of sanitizer he encounters.
Allow for “kill time.” If you wipe down a surface with a disinfectant wipe, don’t immediately follow it with a dry wipe. It isn’t enough time to kill the germs that lurk on the surface. That includes your hands.
Be constantly aware of what your hands are doing. Keep them away from your face and that includes messing with your mask. Your mask should serve as a reminder to not touch your face.
Finally, wash your hands!
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!