I am TERRIBLE about updating this thing lately and after several people have asked how the appointment went, I knew I needed to get it done. Today is a good day for something like this! It's snowing, the wind chill is something like negative 30, Sam has the day off so he is putting together Christmas Legos with Darren, the other kids are keeping themselves occupied, and I don't feel like doing laundry! :)
Overall, the appointment went well. Dr. Cooper (the urologist) was VERY happy with the newest kidney ultrasound. On the last scan, there was some inflammation on the kidneys (which is a bad thing) but this one showed just a little inflammation on 1 kidney and none at all on the other, so he was very pleased with this and said we should just keep with the 3 times a day urinary catheters. Kai tolerates them very well. They are definitely getting much easier for us now too. We asked Dr Cooper about moving up a size in the catheters and he thought that would be fine. This tiny bit of difference in cath size makes a WORLD of difference in the speed that the urine comes out. Wowza...I couldn't believe it. Kai doesn't seem to notice a difference and it takes about a 3rd of the time, so that is pretty nice too. The only thing Dr. Cooper seemed a little concerned about was the fact that Kai has lots of bladder spasms. That's why he has wet diapers and stuff-the urine leaks out during these spasms. Since the bladder is a muscle, the continuous contractions make it bigger, just like any muscle would with lots of contractions. However, if the bladder wall starts to thicken, that is a bad thing, so he is watching that as well. He mentioned that at Kai's next appointment he wants to do another urodynamic test so we'll see what that says I guess.
The newest major thing we are doing are daily "bowel cleanouts" (aka enemas). My little trooper is definitely NOT a fan but a VERY dear someone sent him a new Kindle Fire complete with kid safe case and Amazon gift card so that has helped a TON that he gets to play "my bery own Kinnel" with some new games and new Diego episodes. Every time I look at that Kindle I wish I could give you a big hug Very Dear Someone. It means so much.
Anyway, basically every evening Kai lays on his side and we put this catheter thing in his bum. We take tap water in a syringe and put it in one head of this catheter and it fills up a balloon inside his bottom. Then we pull it back and the balloon basically acts as a stopper so that the enema solution doesn't come out as soon as we put it in. Then we put a solution of saline and glycerin in, put a cap on the catheter and he has to lay there for around 5 minutes while it does it's thing. This is when he usually starts to fuss and say his tummy hurts because the glycerin causes cramping. That's what it's supposed to do because the cramping is the muscles moving the stool along. After about 5 minutes we put his urinary catheter in, put a cap on that, move him to the potty, take out the urinary cath cap, remove the water from the little balloon thing, and in a perfect world everything just drains nicely in the toilet. It's not usually that easy though. We are still trying to figure out the right ratio of glycerin and saline and if we should give him his Miralax still and if so how much and all that fun stuff. Every person is different so there is no perfect formula and it can change daily depending on what he has eaten, etc just like a normal persons stool would change based on diet. Plus, he is obviously not a fan of the tummy cramping and it absolutely breaks my heart when he cries. The other day, I decided that I would just give it to him straight and be honest with him since he is such a little smartie. I told him that the tummy cramps make him toot and then his poops come out and that makes his tummy feel better. So now when he has a cramp, I say "what does an tummy owie mean?" and he will say "I have toot coming" and what happens after the toot? and he will say "my tummy feel better" and that seems to calm him down a little bit. He has to sit there for a while-usually around 30 minutes or so, but normally he does ok and just plays his Kindle or Sam's phone. Sometimes if he has really bad cramps, I sit by him and just rub his tummy a little and kind of talk him thru the cramps for lack of a better description. I'm glad we just have to do it once a day that's for sure! Sam has done it most of the time, but I am making myself do it too so when he has to travel for work, etc I can do it. Right now it's kind of a 2 person job to move him from the changing table to the toilet without causing a huge mess :) but we are getting it figured out. We've gone thru lots of Clorox wipes and have learned to just move the rug out of the way. HA! :) This is why I wanted to start this plenty ahead of when he was in preschool. I knew it would take some time for us to learn what we are doing and hopefully this way we will have it all figured out when he goes to school.
So that's where we are now! We have an appointment on the 8th with the neurosurgeon with some x rays and stuff, so that's next up on the agenda! Not really sure what he will do but I do want to ask him about repairing nerves and see what he says. With all the advances in technology I just feel like there must be SOMETHING out there, but then again our other doctors are pretty on top of things so I think they would have told us. Guess we'll see. Then we go back to see Dr. Cooper again in 3 months for another ultrasound and urodynamic test. We will probably see Josh-the NP that helped us with the enema stuff-again to maybe do some fine tuning and ask questions.
SO that's the latest in the continuing saga of Brandt doctors appointment! :) Thanks so much for all your interest and prayers. They mean a lot! Stay warm everyone!!! :)