This is a hard post to write. I want it to be entertaining and inspiring. I want it to be about overcoming adversity. A story about a sick little boy who defied all the odds and accomplished more than anyone ever though he could. I want us to be hard-earned winners on the other side. It’s not that post though. It’s much more technical than I prefer. Also the story isn’t finished and I don’t know if we’ll be winners.
Back to the beginning…
When I was pregnant with Nathan I would go to the perinatologist every other week for a sonogram. On more than one occasion the ultrasound tech would comment on how big Nathan’s bladder was. We’d wait a long time for him to pee while making jokes about how one day he would be super easy to potty train because his bladder was made of steel. Those prenatal visits were very foreshadowing.
He was born and many of you already know the story of his birth. (If you’re not familiar with it, you can read more here.) He had a UTI in the NICU that nearly killed him. As a result we learned pretty early on that his kidneys were small and that he was refluxing urine back up potentially causing some damage. His creatinine levels have been great though, and that’s what measures kidney function. Everything seemed to be checking out fine so we really wanted to believe that he would outgrow the problem like the majority of kids with urine reflux do. Also, pretty foreshadowing.
Then when Nathan was nine months old he had surgery to untether his spinal cord. We believed he was having pain correlated to bladder function which is correlated to having a tethered spinal cord, and this was our attempt to help him feel better, just as it had worked on other kids. It may have helped? It may not have? It’s hard to say. He did have a good run of no pain symptoms for well over a year. Regardless, the placement of his tethered spine was yet again foretelling. The higher up the tether, the more likely it’s related to bladder dysfunction.
Fast forward I don’t know how many ultrasounds, labs, VCUGs, plus one DMSA and one Urodynamics study later and we are finally piecing parts of the puzzle together…in New York City of all places.
Nathan has something called neurogenic bladder. Now he’s had this diagnosis since infancy but the reality of this label is just now kicking in for me. What it means is that his bladder is not properly voiding. The pressure system is dysfunctioning so when it’s time for him to get rid of waste product he either retains it for long periods of time (13 hours being the longest we’ve noticed) or he pees at such a high force that it goes straight back up into the kidneys. When the kidneys register this, they create even more urine and it’s a vicious cycle.
What is particularly interesting to me is that instead of having a congenital defect of his right kidney like we thought, Dr. Alam believes his right kidney sacrificed itself for the left. In other words, it took the majority of the hit of the pressures so that the left one could still function. If we were to remove the right one like the doctor in Houston suggested, we would be subjecting the left one to further damage. The problem as it stands is the calyces of both kidneys are damaged. We can’t repair the damage that’s done. As I said, Nathan’s creatinine levels are coming back nice and low, however creatinine is based on muscle mass, which Nathan doesn’t have much of. So we are doing a cystatin C test to determine the true level of deterioration. As it stands, Dr. Alam feels he could be just one UTI away from going into kidney failure.
This is very sobering to me, however I also feel like saying, “Hey everybody, I’m not crazy! Did you hear that? I’m not the crazy mom!” Because I’ve felt like a crazy mom trying to explain his unexplainable symptoms. So much so that lately I feel like I need more witnesses to his pain for fear people will think that I’m lying about it. In one visit this doctor tells me I am almost absolutely convinced that his abdominal pain you’re describing is directly related to what’s going on in his bladder. It hurts his kidneys when all his urine shoots back into them. In his words, “He’s one sick little boy.”
The treatment for this problem comes with no guarantees and it comes at great sacrifice. The treatment is that we need to catherize Nathan every three hours around the clock, except at night, he can have an eight-hour break. In theory this will alleviate some of the high pressures in his bladder and eliminate the waste product from his body without his kidneys risking more damage.
This is obviously a huge committment, even for a nurse-mom. I don’t have a super great attitude about it right now.
It’s been long a journey getting to this place at this time. Nathan is a medically complicated kid and he doesn’t do things according to the textbook which is why all of our previous attempts to alleviate his pain have been unsuccessful. Plus, pediatric urology is a relatively new discipline. So much is still being studied about pediatric kidneys, which respond to injury very differently from adult kidneys.
So with all these different opinions, do I trust this doctor? Yes. In fact, I think I may have discovered the secret to finding an amazing specialist. (Besides listening to my friend who referred us to him. Thanks Bea!) Listen up. Here it is. The secret is, if the doctor’s nurse follows him/her across the country to a different hospital system, chances are you have a good one. That’s what happened to our incredible neurosurgeon, Dr. George, who operated on Nathan’s spinal cord when he was recruited to Austin. And that’s what happened when Dr. Alam moved from Cinncinati to NY. My husband asked Dr. Alam’s nurse why she came with him and she simply said his outcomes are far better than the other doctors. I have to say, I went to Miami University in southwest Ohio and trust me when I say, it’s nothing like New York City. So when someone is willing to give up everything to move from the known realm of rural Ohio to one of the world’s largest cities that’s saying a lot.
I desperately want my little boy to feel better. We have to help improve the quality of his life. Now that we were told he could be nearing kidney failure at 2.5 years old, I want answers to questions I can’t ask, because of the urgency of today. I have to do today. I have to stick a tube in him and help him pee, today. Six or seven times, today.
This is a story half written. A story with no heroes to speak of just one battle-worn momma and her little guy who did nothing to deserve such a shoddy bladder. Perhaps we’re at the height of the conflict in this unfinished story. Because the way I see it, in order to improve the quality of Nathan’s life, I (we) have to sacrifice the quality of mine (ours). How am I going to work that out within my heart and then live it out through my actions. That’s hard stuff.
But really, that’s the story of the cross. One man coming to sacrifice his life for ours. Not that my story compares in regards to the magnitude and significance and sacrifice. Yet no other single experience has forced me to lay aside my own self-interests and desires for the sake of another like this one. I’m just not sure how I’ll do at this. For starters we are going to trial the cathing for a month and depending on how that goes, then talk through other options, like surgery. This month is a major test. A test that makes me question if we’ll come out as winners. I have another son. I have a husband. I have other interests and needs and things that make up who I am. If we choose to catheterize him long-term, I will be tethered to Nathan so he can pee every three hours of both our lives. Granted I do have the help of private duty nursing and my husband who is not at all intimidated by this like I am. So there’s hope and grace. There’s also about to be a whole lot more screaming and wailing and urine in my life. And we’ll just have to wait and see what happens in the next chapter of the story about a little boy’s bladder (as uninteresting as that sounds).
So please bear with me. You’re about to be hearing a lot more about pee-pee.
And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” – Romans 5:5
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!