Okay, I'm no doctor, BUT I am an educated mother. Meaning, you told me that my child has vesicoureteral reflux (VUR), so I researched it and have paid close attention to everything you've ever said.
Yesterday, my mom and I took C (along with Q) down to St. Christopher's Children's Hospital for her urology appointment. She had a kidney ultrasound and a VCUG (voiding cystourethrogram) in the morning and saw the specialist right afterward.
She did amazingly well during her ultrasound, especially compared to December 2010, when she last had one. At that point, they couldn't even read the test because she squirmed hysterically the entire time. This time, with the help of the iPad, she was much calmer. Hysterical? Yes, but only for the first 1/2 of the test.
The iPad was useless during the VCUG, though. During the procedure, they catheterized C, and then took pictures of her kidneys, bladder and ureters. I could see the second the dye became detectable, that she still had grade 4 reflux. It was such a bummer, as we were really hoping for some signs of improvement. Nonetheless, it is what it is.
 |
| This is Grade IV reflux. The white ball at the bottom is the bladder, the tubes extending from it, the ureters. At the top of the ureters, you can see that the urine flows into the kidney, the flowery area. |
----screeeeechhhhh--- HOLD THE PHONE!
Let's just say that was not what I was expecting. What happened to "there's a 60% chance that kids with grade 4 reflux will have to have it surgically corrected. Since we haven't seen any improvement at this point [12/2010], I am going to assume that we won't. But, she is still young. Let's give it 15 months, recheck, and if there is still no improvement, I would recommend surgery?!"
AND...her kidneys have increased in size. Let's just say, that's not good. The medical term is hydronephrosis. In essence, as a result of the urine coming back into the kidneys, they have been scarred and damaged. This decreases their efficacy and could cause problems down the road for her. Currently, her blood pressure is 110 over 64. For an adult, that is great. For a 2/3 year old, it is too high. Now, could her bp be up because of the stress of being in the hospital? Yes. But, I must note that while the nurse was taking her bp, she was calm and had a smile on her face. They also don't take bp readings on children this young at their primary care provider appointments. So, we really have nothing which to compare her bp reading. But, the fact of the matter is that high blood pressure is a result of damage to the kidneys, so we should be cautious. An appointment with a pediatric nephrologist was suggested.
That's when I told him that I'd rather not wait. C will be starting preschool next year. I don't want her to have to miss it for surgery and doctor appointments. She is terrified by the doctor already. There is no way that I want to prolong this for her. Each additional appointment with her urologist results in another catheterization which causes her pain and fear. Every time she has a fever, she gets catheterized. This is just really no fun for anyone, especially a toddler. Her medication has to be specially made, so I don't carry it around (don't want to lose it). This means that she can't spend the night at grandma's house or her friend's house unless I've planned it out and brought her medication along. The medicine is not cheap. And, let's not even touch the cost of health insurance. We selected our current plan based on surgery this year. Let' just say that it isn't cheap.
What do we get for waiting? An extremely slight chance that the defect will self-correct. In 2010, he said that it was less than 10% that it would. Of course, I don't want to see my girl suffer and undergo surgery, but I don't want to put off the inevitable and make it more of a memory than it should be. I think that at this point, she probably wouldn't remember it at all. I'd much rather her have little to no memory, than to be traumatized further.
Next step? C will have a DMSA renal scan towards the end of March to assess the scarring on her kidneys. She's had this test once before and it wasn't pretty. 2 hours prior to the procedure, they inject radioactive dye into a vein. Then, the patient has to lie extremely still on a thin board as they have a device take pictures of the kidneys, from both top and bottom. C did not do well with this, so much so, that they had to take a huge cloth and wrap her entire body to the table. She was horrified. This time, they are going to sedate her. The sedation is at my request. Since they have to tap a vein anyway, why not give her some peace at the same time. I must admit that I am a bit nervous about how her body will react to the sedation (it isn't 100% safe, you know), but I think its best for her. Regardless, we can always change our mind about the sedation, if we deem it to be too risky, or if she seems willing to cooperate during the test.
The previous DMSA scan showed some scarring or a growth abnormality or nothing to be worried about. Don't you just love when the results are so definitive?! [this is where a sarcastic font would come in great use]. I'm feeling that this one will probably show more definitive scarring since we haven't seen improvement in the reflux, and we've seen the high blood pressure. Fingers are crossed, though, that it shows nothing.
After the scan, C will have another appointment with her Urologist to discuss the particulars of the surgery.
No comments:
Post a Comment