Saturday, June 9, 2012

Getting So BIG!


Cole with his Jul's

Cole is changing so fast! He's rolling over, and just figured out last night that if he keeps rolling he can get to his sister's toys and shove em in his mouth, much to her dismay, lol.  He loves to babble, and Mike is convinced he heard Daaaad (yeah lots of wishful thinking there).  Mostly its a lot of bababa and one little ma. (It's my blog here people.)  He is pretty in love with his older siblings, especially Julia, who just loves to "mom" him!  He gets the biggest kick out of watching them run around being wild little things; he kicks his little legs and shakes like "let me at em". 
He also LOVES to be outside.  It's a surefire way to calm the crabys.  So much out there to look at, he's in awe.  We went out to the state park the other night and grilled hot dogs and smores, and took the kids for a walk.  He was so happy out there!
 




May 24th Appnt

Cole had his appointment with the peds urologist, Dr.Steinhardt this morning in GrandRapids following a renal ultrasound at Devos.  He said that the hydronephrosis appears worse on the scan, however his bladder was full at the time they took the measurements, and they didn't record the images after he voided.  Because of the severity of Cole's reflux, along with the fact that his kidneys essentially act as another resevoir for urine, much as the bladder does,(the center of his kidneys is hollow and full of fluid for lack of better explanation with out a visual) when his bladder is full it backs into his ureters and bladder which can account for the hydronephrosis appearing slightly worse.  He didn't think it was indicative of causing more damage.  By nephrology's "equation" which is a combo of lab work, weight and height, Cole's number puts him in stage 2 renal failure, at a 61; stage two ranges from 80 to 60, stage three beginning at 59.  There are five stages of renal failure, stage two being unsymptomatic, determined by lab work.  You wouldn't find it if you weren't looking in most cases.  Stage three he would begin to experience high blood pressure, etc.  The last letter we received from nephrology explained that Cole's creatinine level can be falsely indicative of better renal function than is actually present, and they feel this is the case.  Dr. Steinhardt explained this is because it's very difficult to obtain a truly accurate picture of renal function in infants because they aren't large enough to get a body mass index, 24 hour urine, etc.  He was happy with his creatinine however, very happy I'd say.  It's trended down so much more than they ever thought possible as suggested by the imaging.  He told us that he feels crystal balls can be flawed, and not to give up hope for him bypassing a transplant, or at least making it to his teens or early adulthood prior to needing one.  He said while it looks very likely he will need one, he doesn't think anyone can say for certain; that he's had a couple of patients look like Cole does and they astound everyone and become adults with weak, but functioning kidneys.
He told us that the two offices, urology and nephrology had their monthly meeting of the minds the week before, and that the nephrologists felt he needed to correct the reflux and the UPJ obstructions to stop the infections and protect his kidneys from further damage from the obstructions.  The idea is obviously to get his native kidneys to sustain him as long as possible.  Dr. Steinhardt along with his partners disagree with doing the surgery as a rule before one year of age due to a lower success rate, increased complications (such as losing the kidney and needing dialysis) and the fact that at one year of age the angle the ureters enter the bladder changes as the abdomen elongates, dramatically reducing the risk and frequency of infection in boys in both children with anomalies such as Cole's as well as in those with out.  He explained that nephrology feels there is need to go in now and correct the obstruction as they think that it is potentially further damaging the kidneys, and he has such little reserve.  Urology on the other hand does not feel that its possible for it to be true UPJ obstructions, only a partial at this point, as on the VCUG at birth the dye freely flowed into the kidneys, because of the way the dye drained on the nuc med scan at two months, as well as the urine that is back washing now- this in their opinion is not possible with a complete obstruction.  As for the reflux itself, there isn't anyone saying that they feel "certain" that it in and of itself causes damage to the kidneys; agreeing that it does put him at a higher risk for infections that can damage the kidneys, especially if not treated promptly and aggressively.  He shared a study with us that he had compiled, children with one kidney that were followed into adulthood, or until their kidney had reached it's "adult" size.  The study was compiled of two groups of 25, one comprised of children with relux, the other without.  At the end of the study it was found that the one kidney grew to a larger than normal size to compensate for the lack of a second kidney in both groups, however, the patients with reflux measured on a smaller curve than those with out.  The question arrises then, does reflux in and of itself cause a weaker or damaged kidney?  The children in this study were NOT devided however according to those that experienced accompanying infection vs. just the reflux with out infections, so it was inconclusive as far as helping us make a decision for Cole.  Steinhardts opinion, along with most of the urologic community in general, including the top research centers in Scandinavia, feel that the reflux on its own is not a threat, but he wanted to share the new data and make sure we understood there is now a question there.  He is of the opinion that time is on Cole's side, and that he's doing well now.  While nephrology feels that this is a kid whose getting too many infections, he feels that there were two, back to back; the first of which was most likely hospital introduced when he was cathed for a test, the second before he'd had time for the inflamation in his bladder to heal and he wasn't placed on a prophylactic to allow it time to do so.  He feels that if he's infection free (has been for two months now), GROWING, which is the most important thing for him, especially as he's as yet too small to accept an adult kidney in the event they do fail completely, that we let him be, revisiting our options if his condition changes. When he hits one year of age, we can assess at that point the degree of reflux and obstruction present.  He said that the reflux could be corrected surgically (where as nephrology felt you may only reduce it from a grade V to a III with his severity) and that there absolutely was a very good chance still (nephrology felt there wasn't any chance) that it naturally resolve itself dramatically by 18 months still (both the obstruction and the reflux) and that particularly in boys it can resolve itself very rapidly.  If at one year nephrology would like it corrected to make certain we have done everything we possibly can to protect his remaining renal function from anything and everything that may potentially be a threat, he would operate then with minimal complications and a much higher success rate with out being nervous.  He expressed that if Cole were to experience multiple repeat infections, he would break his own rule, but that the surgery would make him "very anxious" at this point.  Since I've had a good decade of experience with Dr. Steinhardt with Kaitlynn and know he's very confident with this surgery, I know if he's saying it makes him "very anxious" its for good reason.  We're inclined to agree with him.  Let him grow with time on his side.  And pray.  A LOT.  : )  And check out the super cute pic...they were checking each other out!