Tuesday, November 10, 2015

Kidneys, aka trouble makers...and other things

Today we went up to Children's for yet another kidney ultrasound & consult with our nephrologist. Things got off to a bumpy start in radiology when I realized that he had a minor blowout somewhere between the car & the ultrasound room. So, after we got him cleaned up, we were ready to go! The tech was able to get all the images she needed but it was a lot more work to keep him still than last time! The kid got ultrasound jelly up to his armpits, on his nipples, all over my arms, and even on my necklace! It's a good thing he's cute!
Waiting for the tech to confirm that she had everything she needed. 

Then we headed up to Nephrology to meet with Dr. Hanevold. Everything was very encouraging. His right kidney is greatly improved & downgraded from grade 2 to technically still grade 1, but the radiologist even commented in the report that it was a "minescule trace" amount of hydronephrosis. The left kidney was also downgraded from a 2 to a 1, but was still much more obvious. She still wants to be sure that it resolves so we will see her again but not until sometime just before his 2nd birthday. She said no need for a special trip up, just combine it with another visit day. Plus by then we will have results from his genetic testing so just in case it turns something up, we can talk about that too. 

Which reminds me, I owe you guys several other updates! 

Yes, he got a third helmet. We went all out decorating this one since he was going to be in it for Halloween. 
Boooooooo, lame white helmet we ordered. Until dad fixed it up:

Aaaaand complete with the costume on Halloween: 

No results from Children's in Philly yet. It's been a full 6 months now, so hopefully soon, but they did say it can take up to a year. One thing I realized today is I never got super clear about what all this testing is looking for. I'm pretty sure when we started all this I posted about the whole amount of DNA vs the spelling of DNA issue. We know he has the right amount. We just don't know if he's got "spelling errors" or not. The study in Philadelphia won't analyze the spelling of all his genes, just some. But I don't know if they select those genes based on his personal health history, or if it's a predefined set. Guess I ought to call & find out. 

Last but not least, his clogged tear ducts. He had an appointment to clear the duct on September 16th. Dr Weiss had said that since he was doing it in the OR with full sedation, he would put in tiny little stents to hold things open & improve the long term outcome. Unfortunately, he couldn't get the stents in. He was afraid he was going to tear Arron's tear duct. So he cleared the blockage & put him on some antibacterial eye drops because they had been blocked for a while & there was lingering infection. This was the first time in his career that he couldn't get the stents in. And of course the CT scans Arron had done before & after surgery didn't have the fine facial details he needed to take accurate measurements & find small enough stents. So fingers crossed they don't clog again & if they do, he will probably order a new CT to have a better look at what's happening internally. 

But I'm falling asleep typinv, so I guess it's time to go. 

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