11/15/2024
Song for the mood: “Even if” by Mercy Me.
Have you ever had the winds taken right out of your sails? You’re getting by, doing great, feeling like you’re finally on top of it with a good routine and boom! You get hit in the gut with a buzz kill. Or imagine that you’re on the beach and building a sandcastle. You spent a lot of time and patience on that castle building every little detail, making sure the sides are smooth, the peaks are square and as you’re about to place a little flag to finish*t off, somebody comes over and kicks it, knocking it down from a beautiful sandy kingdom, to a pile of sandy rubble. That’s how Caleb’s appointment went yesterday. I know tomorrow isn’t promised and I should know by now that a doctor's opinion… is well, a very educated opinion.. but still an opinion.
Caleb has been through more than anybody should ever have to go through, and we are so very thankful that God has led him and us out of that fire. But the biggest lasting hurdle that Caleb has had to overcome (other than a traumatic brain injury) is his suprapubic catheter. From the initial injuries from the semi tanker running over his belt line, his urethra became disconnected from his bladder. Since then, he’s had 2 urethroplasty surgeries to essentially reconnect his urethra to his bladder with the hopes that would allow him to urinate like anybody else would. The problem is that both repairs didn’t heal in the way the urologist hoped it would.. imagine the broken end of a hose being sewed onto a balloon, we’ll the end that was sewn on has scar tissue all the way around and scar tissue shrinks closing the end up and not allowing urine to pass through. After 2 failed attempts, Caleb’s urologist left us with 2 options.
Option 1. Do a mitrofanoff procedure that would take his appendix tissue and use it as a tunnel from his bladder, to his abdominal wall. Then when he needs to urinate, we could take a special catheter and insert into that hole to empty his bladder… every time he needs to urinate.. Both Annie and I both agree that would take away a lot of his independence.. not to mention we are both terrified that it would be too traumatic, because it is a fight to just do a simple suprapubic catheter change every 2 weeks.
Option 2 would be to continue using his suprapubic catheter and keep doing what we’ve been doing.
So why do we suddenly feel that the wind has been taken out of our sails, sandcastle knocked down, kicked in the gut?? Yesterday the urologist changed his tune on future surgeries. Before he had been saying that we can continue doing this until Caleb’s 16,17, 18 somewhere near adulthood and waiting until the “plumbing” is done growing and it opens up the opportunity in the adult urology world.. Yesterday , when Annie asked about future surgery, the urologist said that he’s already had 2 failed attempts. No other urologist will want to do a 3rd one and Caleb will be in it for the long haul… boom. Just like that, the distant finish line just disappeared.
I don’t for one second think that this is the end of Caleb’s chances to have a repaired urethra and getting rid of that catheter once and for all. We have been given a bleak prognosis before and Caleb has far exceeded what he was told he will ever do. While I put a lot of faith and trust in trained professionals, I put a bigger trust and way more faith into the great healer. If this is as far as his urologist wants to go, fine. We will find one who wants to finish the job.. even if we have to travel cross country.
One of the greatest things about sandcastles is that they can be rebuilt again. Bigger and better.
