As we began to understand the medical complexities of Nathan’s body, I remember saying to myself, “We will never travel for doctors. We have specialists here and I will not sacrifice the needs of my other family members for one.”
I was very naive.
In the last three years, we’ve followed Nathan’s urologist from New York to Charleston. It has been less of a sacrifice for the rest of us than I expected. It has become part of the design of our family. Our family memories now include travel to hospitals and sightseeing. Mac has come to decide that one of the biggest benefits of a brother like Nathan is he gets to go to different places. He is learning history and experiencing the urban life of places very different from central Texas.
My very favorite thing about Charleston is that it is near part of our extended family. This trip over Thanksgiving my sister drove down with her two boys. We surprised Mac in the lobby of our hotel. When he saw his cousins he nearly lost his lollipop, literally. That part was really fun. He got to spend the day with his aunt and cousins while we went to the hospital.
We were able to consolidate all of Nathan’s medical tests into one day at MUSC (Medical University of South Carolina). We did a renal ultrasound in the morning. Then around lunch time, his urodynamics study. The procedure was done in the hospital, as opposed to the clinic, which made things incredibly efficient.
Bottom line is that his functioning kidney looks great due to the round-the-clock cathing. The atrophic kidney is showing some signs of hydronephrosis and reflux but that is to be expected, as it has essentially sacrificed itself to become the pressure value keeping Nathan healthy.
Years ago when we began this journey, we were told by Dr. Alam we needed to start cathing Nathan every three hours. Every three hours. (If you’re not familiar with this story, it was monumental for us.) I was devastated, angry, and mostly exhausted. Already, I felt incredibly burdened by Nathan’s care. And I didn’t know how I could add another thing to his already rigorous medical regimen.
We need to keep cathing for the duration of Nathan’s life. As daunting as that sounds, it does not bother me like it used to. Cathing has become part of our routine. Nathan doesn’t fight it. In fact, sometimes I think he is relieved. If he had words, I dare say he would ask for us to catherize him.
Cathing has greatly decreased Nathan’s pain and helped preserve his kidney function. He cries far less than he used to. We have a system in place and it has become normal for us. (Except sometimes when we have to cath him on a yoga mat in a public bathroom or in the car, then it doesn’t feel so normal.)
Yet I still wonder how we will have the strength to take care of Nathan long-term. The answer comes only through faith that God will provide. I’ve looked other places. I know the energy will not come through me or my husband or any caretaker. Truly, it is a daily strength that He gives us.
This visit Dr. Alam talked about a surgery which may make things more manageable. It’s not in Nathan’s immediate future, but we do have an option to reconstruct his bladder and colon to make his quality of life better. Essentially this surgery would make it easier to cath him from a stoma directly to his bladder rather than his penis. We would also have a separate stoma in his colon to push fluid for his enemas. Nathan is going to get bigger, he already is. Lifting him is more and more of a challenge for my body. To be able to cath him by simply lifting his shirt would be a game changer. It would also help tremendously with his GI system.
I am no longer naive.
As with any elective surgery, we do not take it lightly. It is a complicated operation with a long recovery process. We would have to live in or near a hospital, far from home, for a few weeks. It is expensive and disruptive to our routines.
Yet, I am thankful to be sitting with this option before us. I’m more aware and knowledgeable now. I am no longer naive. There is so much about Nathan’s medical complications and development that I simply cannot control. This surgery doesn’t give us guarantees, but it does offer the chance of a better quality of life for him, and us, as his caregivers.
Sometimes our life feels like a delicate balance of cons and cons. Managing them has become a huge part of our lives. We pray not just for strength, but that we are making the right decisions for Nathan, for our family.
In the meantime, I’ll leave you these pictures of our carriage tour of historic Charleston.
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