June 2, 2016 "Urodynamics Study"
A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.
The last time Rayden had this test done he was only 3 months old and slept through the entire thing. I was really worried about how he would handle being strapped down to an examining table for so long now that he's an active toddler. Rayden was absolutely amazing during the hour long procedure!! I stood beside him the entire time wearing that heavy, hot led vest they make me wear because of the x-ray machine.
The procedure is such a terrible process. They place little sticky monitors all over your bottom and lower belly. They place two catheters into the bladder. One is to fill up the bladder and the other to measure the pressure in the bladder. They place another catheter in the back passage which allows the pressure inside the bladder to be compared with the pressure outside the bladder. I was already sweating bullets in the led vest but then I got really concerned because the first nurse tried three times and couldn't get the catheter into Rayden's bladder. The other nurse got it on the first try though. Once the catheters are in the correct position, fluid runs into the bladder at a controlled rate. During this time the nurses are collecting data on the computer, taking pictures with the x-ray machine and looking for leaks.
Dr. Ross says he has a good bladder but he is leaking quite a bit. She says the urine comes out which keeps the volume low and protects his kidneys. She says it's actually the perfect situation because if his bladder was just sitting there squeezing all day the pressure may shoot high and mess up his kidneys. The downside is she believes he will have extreme difficulties with potty training. His muscle is just not going to be strong enough to hold the urine in. He doesn't really have the ability to empty his bladder either. Of course, we will talk about other options when the time comes. Here again, it's one of those wait and see situations. I'm just thankful we don't have to catheterize him for now and we can just continue doing what we are doing.
June 9, 2016 "Casting #20"
Well "Mr. Houdini" has done it again! He has somehow managed to slide out of his cast for the fourth time!! This one was even glued on! We had to travel to UNC again to be worked in to see Dr. Campion. After the nurse removed the casts Rayden got fitted for some new AFO's. They should arrive in three weeks, just in time to get out of the casts for good (we pray)! While we waited to see Dr. Campion, we had a lot of extra time to examine Rayden's feet. He had two blisters, one on the tops of each foot where the feet and legs meet. They didn't look too bad though. His right foot looked wonderful! I have never seen it so straight and actually pointing up at 90 degrees like a normal foot!I was very upset when I realized Rayden's left foot was nowhere near 90 degrees! It was almost as straight as his leg! I guess that's what happens when the cast slide down repeatedly!
When Dr. Campion came in he called Rayden 'Houdini' as well, I suppose that's his new nickname, haha! He removed the bandages so we could see his surgical scars. I was really impressed. No redness, swelling or bruising. They looked really good. He did a lot of stretching on the left foot and was actually able to get it back up to 90 degrees! (I just pray it stays that way now.) He proceeded to glue on Rayden's 20th set of casts. Believe it or not, Rayden was so tired that he actually slept through the entire thing!!!!! I told you he was a pro at this.