VCUG- Moving Forward

Today Owen had his fourth VCUG (voiding study). The first was last October when Owen got sick, when this whole nightmare began. It was the study that diagnosed his Grade 5 Vesicoureteral Reflux. The next two were diagnostic of issues with his ureterostomies. The one performed today was for the purpose of checking out his bladder. I apologize if I am repeating myself, I don't even know what I have said and not said. Essentially Dr. Gazak needed to see what condition the Little Man's Little Bladder is in after just sitting disconnected in his body since early December. The bladder is a muscle, therefore prone to atrophy when not used. Owen's bladder has not been used in the voiding process to store and release urine. Atrophy is to be expected. The actual study did not go well. Actually that is a vast understatement. It isn't a pleasant thing to have done under the best circumstances. In order to fill the bladder with dye it is necessary to place a catheter. Painful. To start things off, the radiology nurse didn't even know what a bilateral ureterostomy was. I explained it to her, and I did it well if I do say so myself. I have never professed to be a medical professional, but I have been through the ringer as the mom of a baby with a very serious urological condition. To her I guess I was just a mom bringing her kid in for a procedure. That is to say, she didn't believe a word I said. It didn't take me long to realize that she had no clue what I was talking about so I quickly resorted to my "he voids urine through holes in his belly" explanation. I'll cut this short so as not to get too graphic, but he had to be cathed three times. As a mother, it is a miracle that I did not physically harm the nurse that was performing these many failed catherizations. I finally became the voice of reason- "the cath is too big that is why the dye is leaking out. Do you have a feeding tube that could be hooked to the IV drip? It would be smaller to insert." What a novel idea! That is what they did and what finally allowed them to get the images they needed. Poor Owen cried, screamed and wailed. I stood there singing to him, talking to him, reassuring him and wanting to scream and wail myself. Nothing I did could soothe him and we both just wanted it to be over. Poor Wes was sitting right outside the door listening to him wail because only one parent is allowed in the room. I don't know which is worse. After the VCUG we headed straight to the urologist's office. Dr. Gazak hadn't arrived yet, having gotten stuck in surgery. This is not uncommon, and is also totally understandable. I know if it was my child on the table he would do what he needed to do so I don't mind waiting when it is someone else's child. I also knew that I was not leaving that office without seeing him and getting some answers. The wait was really very short and Owen amused himself walking around the waiting room trying to play with a few bigger kids that were there waiting also. All of the nurses in the office were thrilled to see him, couldn't believe how big he had gotten and were shocked to see him walking. We were called back to see the doctor and he reviewed the films with us. Owen's bladder is smaller than it should be at this point, but slightly. It held roughly 40 cc of fluid before voiding. The stumps of his ureters (the parts left connected to his bladder during his ureterostomy and sutered closed) were very large, particularly on the right side. Without getting into too much medical jargon, this is because they were the parts left connected. The ureters which were disconnected were allowed to "rest", given a chance to have the pressure that was being put upon them by the reflux alleviated. As a result they shrunk. They are ready to be reconnected to his bladder along with valves to be created by the doctor. The doctor left those stumps in there on purpose. He left them in case he needed extra "material" to enlarge Owen's bladder if need be. As it is his bladder is a bit smaller than it typically would be. If he had the reimplantation surgery without any alteration to his bladder, normal use would reverse the atrophy and allow the muscle to grow. However, since that extra ureter is there and just waiting to be put to use, Dr. Gazak is going to use that ureter material to augment Owen's bladder. If you got through all that, thank you. I am having trouble completely wrapping my own brain around it and I have been living it for 10 months. The bottom line is that while Owen is doing wonderfully, it is time for him to take the next step in his health journey. In this case that means another surgery. I am scared. I hate that he has to have another surgery. I hate that it is so major. On the other hand I love my son. I look him in the eyes every day and he shows me that he is a fighter. All I have to do is be there to fight next to him along with Wes and the rest of our support system. The surgery will likely take place toward the end of Septmeber. I am waiting for a call from Dr. Gazak's scheduler. It will last about 3 hours and Owen will spend about 3 days in the hospital. Semi-permanent stents will be placed and then be removed a few weeks later during an outpatient cystoscope under general anethesia. Like I said, it is a lot to digest and I am scared, but we know that this is a HUGE step in the right direction for Owen.