April Appointments

Wow!! It's been so long since I posted! Life is crazy busy around here.  But its a good crazy : ).  Cole has been walking, well, running all over the place now for months.  He's growing and thriving and every bit as busy and inquisitive as his siblings.  Inquisitive is the word we use for curious and somewhat naughty toddlers in the Haveman house.  Lol.  He never stops finding things to get into and climbs everything in sight.  He is definitely doing justice to his nickname, Monkey.  He keeps us all on our toes and laughing everyday.  Just this last week or two he's decided he is going to give as good as he gets with big brother Logan, and has started to pull on his hair, push at him, and thump him on the head with the remote control.  Good times.  He loves cuddling his big sisters. He's such a determined and smart little boy.  His latest trick is taking the older kids' snack wrappers and walking them to the kitchen trash to throw away.  So cute.  Love this sweet little guy. 

Isn't he just adorable?!  We've been blessed with so many people praying for and inquiring about Cole's health that I wanted to make sure I updated everyone.  We had our latest appointments with both nephrology and urology the first two weeks of April.  Unfortunately, the ultrasound showed no improvement regarding the dilation of both kidneys and ureters, and his bladder remains quite distended.  As I think I wrote on an earlier post, the original plan, even prior to knowing the extent of his renal damage, was to observe up to 18 months of age in hopes that the UPJ obstructions might open up on their own, at least to a significant degree, before deciding on surgical intervention.  As this hasn't occurred, we are tentatively penciled in for surgery at Devos on June 25th, following another VCUG (bladder xray) on June 5th, which will determine the extent of remaining (if its improved at all) reflux.  This proposed surgery will attempt to correct the reflux, meaning the ureters will be reinserted into the bladder at a different angle.  Cole's ureters are also hydro/megaureter, meaning they are grossly dilated, and rather than functioning as they normally would, are large like colon, and have twists and sort of snake around, pooling large amounts of urine.  So, this surgery will be complex in that it will also involve reconstruction and tapering of the ureters.  It's estimated at 6-10 hours long : (.  I think Mommy and Daddy downers may be in order that day.  From his experience, the surgeon feels that the obstructions are likely due to the twists in the ureters, rather than some intrinsic narrowing or extrinsic compression, and predicts that the UPJ will likely resolve/improve by straightening/reconstructing the ureters during this surgery.  Sort of like smoothing out a partially kinked garden hose.  That said we won't really know for some time following the procedure, and there's a possibility a later surgery may be required to resolve the obstructions.  That would involve disconnecting his ureters from the kidneys and reconnecting.  There are doctors that operate on both ends of the ureter at once, however its viewed by his Dr, and us, YIKES, as reckless, as the ureter receives blood supply from both ends, and runs a risk of becoming necrotic if completely severed from both supplies at once. We had mixed feelings regarding operating at all over the past months, as Cole has been growing, thriving, and infection free since he was 3 months old.  Obviously you want to do all you can to be pro active in maintaining his native kidney function as long as possible, and the reflux and dilation can potentially damage the remaining healthy tissue.  However, it's infection and scarring that have the greatest potential to wipe them out.  This surgery carries a 30% chance of subsequent infection, and it takes approximately 6 months after successful treatment of infection to resolve the inflammatory process that occurs with it, and bring his risk back to base line.  While we'd be hyper vigilant, it's scary to think that we may take our thriving child and subject him to those possibilities.  Especially as the most important thing is that he grow well so that he can easily except an adult kidney if that day arrives sooner rather than later.  We were also feeling, as nephrology has told us a transplant is imminent, and with transplant his existing ureters are removed and hence obsolete,  that it seems to be a matter of how much time are we buying him by correcting the plumbing, so to speak? Six months? Six years?  We know there really is no way to answer that question.  We truly didn't know which way to lean.  At this last appointment, however, it was explained that there are positive implications regarding transplant for this surgery as well.  Because of the degree of reflux, and the fact that his kidneys can hold up to about 40cc's of urine a piece, Cole distends his bladder prior to urinating every time.  He then voids a certain amount, not emptying his bladder, as the urine takes the path of least resistance, and slosh's up into his ureters and kidneys until they are filled to capacity before traveling back down to his bladder, distending it, at which point he urinates again.  Because of this, he will always have this grossly distended bladder, until the reflux is resolved/improved.  If this was not corrected surgically, at the point a transplant was needed, he would have to have his kidneys removed months prior to receiving a new one, bridging the gap with dialysis.  That would allow for a "dry bladder", which causes it to contract and shrink back down to an acceptable size for it to function appropriately and allow for minimal potential of harm to the donor kidney.  I didn't realize this prior to Cole being born, but when you receive a transplant the new kidney is placed low, to the side of the bladder, behind the pelvis, to allow for better blood flow and more protection.  By the nature of its position and the angle of the ureter, all transplanted kidneys have some degree of reflux, which makes the bladder distention a problem.   If the bladder issue is resolved or improved with this surgery, it would likely be possible to remove the old kidneys while transplanting the new, and avoid dialysis all together.  So, knowing that even if his current "plumbing" becomes obsolete, there is still a positive attribute to putting him through this surgery in regards to the transplant, has helped us reconcile the risk vs. benefit.  From the surgeons perspective, he's at an age for a fairly straight forward surgery.  In the best of hands (his Dr's writing books on this stuff), there's a 70% chance of resolving the reflux, but a 95% or greater chance of improving it.  And it can't get any worse.  He did say that we would rather error on the side of too loose and allow for some degree of reflux to remain than make them too tight and create a new obstruction.  So there's that.  It involves a number of stints, I know two are external, running from the kidney, through the ureter wall, into the bladder and out thru his side, draining the urine from the kidney until the inflammation of the ureters subsides, about three weeks, at which time they're pulled in an office procedure.  A third, and I can't recall if there are three in total or four stints (We'll know more later), is internal, and hangs into his bladder.  This one can hit the sides of the bladder causing painful spasms.  Sounds like they try to control this with Ditropan.  It's pretty nerve wracking.  He's just so little.  I hate that we ultimately have to make the decision, vs a Dr. just saying "he HAS to have this".  Lots of praying.  That said, both Mike and I have come to a place where we've accepted we have no control, who does, really, and there's an immense peace that comes from truly giving everything up to God.  Our faith has grown a million times greater than I ever could have imagined. It's been a long year, but were getting there.   I feel like we've made it to a place where we know not only will life go on, but its going to be GOOD!!  Instead of being all consuming, it feels like this is becoming just one piece of our lives.  None of us really knows what tomorrow holds, and now more than ever we really appreciate even the smallest of blessings in our lives.  Right now we're praying for him to remain infection free following the cath needed for the VCUG.  Thank you all for keeping him and our family in your thoughts and prayers! Means the world to us!!



VCUG at 12 hours old



Bladder with megaureter visualized



And finally, I'm able to look at Cole's imaging with out wanting to break down.  So for all of our Dr. and nurse friends who've been asking, here's a couple shots from the Dec 2012 ultrasound, with the exception of the VCUG, which was done about 12 hours after birth.





Right Kidney





Left Kidney