Wednesday, November 25, 2015

Always the "interesting kid"

Today's post isn't really about A2, other than to say he's making huge strides at PT recently and has started crawling!! 

So today, we took my oldest stepdaughter to Group Health for her 3rd knee surgery (she's 12). The plan was to just remove the whole meniscus because it looked on the MRI like it was basically disintegrating. But our Dr knew the images weren't very clear & there was lots of signal from scar tissue left by her last 2 surgeries. So anyway, that's not what was going on with her knee. Her plica band was out of place so he removed that & part of her previously removed meniscus was attempting to regrow itself, so he cauterized that to remove the frayed tissue. 

But I knew something else was up because he took us to the consult room to discuss things. He said something about it being for patient privacy, yada yada. But the last 2 surgeries, he didn't take us there & I even commented that when I worked at Harborview you only went to that room when things didn't go according to plan. He chuckled it off, but then after he told us about her knee he said that she was fine, but she's always the "interesting kid" and nobody wants to be "interesting" in the OR. This time, the anesthesiologist noticed a slight change in her heart monitor. All her vitals were fine & whatnot, but the rhythm was indicative of Wolff-Parkinson-White Syndrome & they were going to get a full 12-lead EKG to confirm & consult with a cardiologist to make sure she was ok to discharge home & follow up with our pediatrician & then a pediatric cardiologist later. (Which they gave the thumbs up for.) From the little bit I've read about WPW, it sounds like it can be a complete non-issue or it can be full on life-threatening. 😕 There's only one symptom Bri's ever complained of that could be related, so I'm assuming she's on the non-issue end of the spectrum if she does have WPW. But, better safe than sorry!

So they are sending a report to her Dr. to be able to make the referral. It looks like Group Health's only ped cardiologists are in Bellevue. If that's the case I will probably just ask them to send us to Children's since we already know their routine & I'd rather drive there than Bellevue. Besides, maybe I can combine her appointment days with A2's! 

Obviously the clinic is closed tomorrow, but I will call Friday morning to see if Dr. Asomaning will just give us the referral without being seen in the clinic. Keep you all posted. 

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.