So today was Elijah's cystocopy. Unfortunately, there was no stricture. This is unfortunate because it was the last hope we had that this could be surgical. It was a long shot, but it was a chance nonetheless. On the flip side, it is good news because he doesn't need to worry about going through surgery.
They were able to change the catheter and didn't have any resistance while he was under anesthesia. They even used a larger size. All this means that when he is awake, he is clamping down so hard as to make it nearly impossible to cath him with ease. Which adds to my worries of being capable of doing this three times a day (minimum) at home starting Wednesday. I told the Dr. today that this wasn't going to work at all. He said all parents feel that way.
After he left, the nurse gave me a phone number of another urologist and recommended we go see him. She also after reading the notes and listening to the doctor agreed that this just isn't the best plan for him. I called the urologist she recommended and she is out until tomorrow. I will try again.
Over the weekend, Elijah has also developed what I think may be a neurogenic bowel. He is making messy diapers every 30 minutes. I called his pediatrician, who recommended that we go to the Emergency Room and insist on an MRI. The problem is we are simply exhausted. And the ER means a long wait with a new doctor, who doesn't want to do anything without consulting the other doctors already caring for him.
On the good news side, Elijah is so happy lately - happier than he has been since before the original tethered cord surgery. I think this is because he so much more comfortable than he was with a full bladder. The catheter has not slowed him down one bit.
Please pray that we can quickly find a neurologist to see Elijah, get an MRI ordered and find a urologist that is willing to look at the big picture and consider other options for Elijah's long term.
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