I think this pic pretty much sums up how we ALL feel today. As we turned onto Higbee Mill we glanced in the backseat to see Ross and Kyleigh (Minnie mouse and George the monkey) totally out cold! Today was another LONG day in Cincinnati. We started the day driving before 10 am and did not get on the road home until 7 pm… holy CRAP that is a lot of time to spend in a hospital in one day! I mean I guess I have totally forgotten the MONTHS that we have spent there because this seemed like an eternity!

It was pretty rigorous for Ky as many of the procedures were invasive… we started with Lab work, then off to Renal Ultrasound (to check on the kidney beans), then off to Flouroscopy for a VCUG, then to Urology for formal Urodynamics studies and finally ended with a visit to Dr. Alam. I have to say that for all of our heated words and exchanges… Alam and I are seemingly fine now! LOL I think we were ALL so frustrated that it was just a very intense situation and there is really no one who could have handled it any better.

The results of today are mixed. Good news is there will be NO BLADDER Augmentation surgery. In the words of Alam… “this is completely OFF the table for now”. That is a HUGELY invasive surgery that forever changes the structure and function of a bladder and we had been holding our breath, for TWO YEARS, to find out if it would be needed. As of today Kyleigh’s bladder, while still large, is GROWING! Not just expanding into a floppy, unkempt muscle. Not only that but the SHAPE of her bladder is largely normal now! All the pics you see of “bladder” shapes… hers ALMOST looks like that! So all of our hard fought efforts have made a huge difference there. Also… it is almost certain that she will need a ureter reimplantation to remedy the next part of the post……….

Bad news is the kidneys… we don’t yet know the full extent of the damage.. those numbers will be in later this week… but the reflux which we thought was remedied by cathing, and ditropan AND gentimyicin irrigations… is still there and worse now. She has been upgraded from a 2/3 to a FIRM Grade 3 reflux in the left kidney. Her right kidney is still hanging out, with its extra lobe, and no reflux. We have yet to figure out how the GOOD kidney is the one refluxing…. sigh.

We won’t know the results of the full function testing until the end of the week but I could have literally burst into tears when I saw that kidney illuminate on the flouro screen. Even before the radiologist said it… I knew. I have seen enough flouros to know. It took a medium amount to cause the reflux but nothing even close to her bladder capacity… This also means that it is very likely that her reflux has never “gone away” but is always there in some underlying way… we just are not catching it on the VCUG’s… This makes me feel very disheartened. I know what we do every single day to “save the kidneys” and if THIS is not enough… what is?

Ending with more good news though, her bladder spasms are 1/3 of what they used to be and her pressures have gone from a 121 (4 times normal) to 33 now!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That is HUGE… this means that she is not damaging her bladder and is running LESS of a risk of refluxing often! So… I am holding on to hope that her kidney labs will come back better than we expect. I just NEED those tests to show decent function… I NEED it. ME… not her… not the Dr’s… ME. I need those to be ok.

Overall it was a good visit. It was good to see Alam on better terms and I think that he is fully convinced that I know the entire universe of Urology kids as he pointed out that he is now treating two MORE of our friends! (Suzanne and her son Parker, Lori and her son Benji)… We had a good laugh about that. I was bummed that I did not get to meet up with our friends Lori and Benji who are on the 6th floor right now but our day was just too much and Ky was in a BUTTHEAD mood… we just needed to be home!

So… if you are praying this week… praying for the old kidney beans. Thank you all for all the kind emails, messages, phone calls etc… we truly appreciate the support and prayers. Keep them coming

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