Yesterday Jonah had his stent removed (yeah!) and catheter tube replaced.
This surgery was supposed to have happened on 12-17, but because we had COVID in our household, hospital policy required surgery to be postponed 6 weeks.
The doctor wasn't sure if stent would have to be replaced, but because the x ray yesterday showed good drainage from the kidney without the stent, the doctor chose to let Jonah go without it. He is confident the kidney will drain safely on its own now.
This is great news both medically and from a comfort level for Jonah. Jonah has non-verbally indicated to us often that having that stent in has been very uncomfortable for him these past few months. The daily antibiotic since November has kept infection away which has also reduced his discomfort, but we are hoping no stent will help Jonah feel even better!
Now the tricky part happens.
Because of Jonah's discomfort with the stent and his constant infections after his 1st surgery on 9-4, Jonah's catheter has been on 24/7 drainage. This means that his bladder has not been full for months. This means Jonah has not had to initiate any bathrooming for months.
Now we have to start turning off the catheter and letting Jonah get use to what a full bladder feels like and what he needs to do about it. We also have to help Jonah empty his bladder completely instead of holding some urine back which is what the doctor feels started this whole problem back this summer.
The doctor feels that Jonah started holding his urine (why and for how long we will never know...). This caused both kidneys to enlarge. The left kidney was more severe probably because of scar tissue from the original repair when Jonah was one years old. Then an infection set in which is what finally alerted us to the problem back in August.
Unfortunately we had no idea Jonah was holding his urine. His output, between his pull up and what he would empty on his own, seemed fine to us. That is the scary part.
Which is why the catheter remains because the doctor does NOT want this to happen again. He wants to be very sure Jonah is adequately voiding on his own before he removes the catheter.
So we are back to toilet training 101 in a week. I am hoping and praying that because Jonah will be more comfortable without the stent, he will at least be willing to try and use the bathroom. But I am unsure how to convince him to empty completely. I'm am guessing his low muscle tone/cognitive delay is really making this a difficult issue for him.
For those reasons, I am seriously considering calling in an expert to help me help Jonah over this hurdle. I've been given the name of an ABA therapist in the area who might be able to help with toilet training.
In the past, I have attended many potty-training seminars and read many books about training kiddos with DS. I have even paid for phone consults with a potty training expert from Chicago. I got great information, but Jonah never seemed to respond in the way the experts predicted he would.
Then a couple years ago, Jonah's incredible special ed teacher offered to do a 3 day intensive toilet training with Jonah at school. She made the most progress with Jonah we have ever had!
Since then, Jonah has never been 100% trained, but we at least could have him go on demand and keep his pull up mostly dry.
Of course, now it's very discouraging to hear that even that success was questionable because Jonah wasn't adequately voiding which led to this serious kidney/bladder issue we've been dealing with since August.
So I swallowed my pride a few years ago and admitted I need help and accepted the offer from his special ed teacher. Looks like I need to eat more humble pie and admit that I am out of my paygrade on this one again. I need help!
Of course, if next week surprises me and Jonah pees like a champ, then my worries can be put to rest. But I have feeling that we are up for a challenge, and so I want to be prepared with a Plan B.
We want Jonah to be able to get rid of this catheter. He wants the catheter gone.
In an ideal situation, the doctor thinks the catheter could be removed in the next month if Jonah can prove to us that he adequately emptying his bladder.
Jonah is unique and follows his own special little trajectory. I'm not sure a month is realistic, but who knows? I'm praying for a miracle here!
Jonah after his dose of "goofy juice"
before going back to the OR
Safe back home later yesterday afternoon.
We didn't have to stay overnight which was nice!
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