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. 

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. 

To helmet, or not to helmet, that is the question.

We are up at Children's to see Arron's surgeons in part for regular follow up and in part for them to decide if he needs a third helmet. 

On the one hand, I do think the helmet is limiting his gross motor development. On the other hand, his head is still pretty obviously lopsided. But, how often have you walked up to somebody & really evaluated the symmetry of their head? Ugh. So torn. Oh so ready to be done with helmet therapy, but also want to get the best possible outcome for my tiny sir. 

And for his next act...

About 2 weeks ago I got a call from the daycare that I needed to come pick Arron up. His eye had crusted shut while he was sleeping & they wanted him evaluated for pink eye. By the time I picked him up, ran home to change (it was that crazy hot week), and got to Group Health the poor lil guy had spiked a temp of almost 103. Turned out he had double pink eye & double ear infections.  😥 poor dude was miserable. 

Btw, huge shout out to our pediatrician Dr. Forester Johnson at Group Health. He was booked solid and the scheduling & nursing staff told us we could wait 2 days or hit up Urgent Care. So to Urgent Carr we went. The triage nurse was hoping to take us to the Seasonal Illness clinic but his fever disqualified him. So she touched base with Dr. Johnson directly. As soon as he heard we were in Urgent Care he said he would absolutely see us himself instead of leaving us to wait the estimated 4 hours downstairs. Yay!!

Anywho, everything seemed to resolve with the antibiotics but then his crusty eyes fame back, but no irritation in the whites. So I took him in on Thursday & Dr. J thinks he's got clogged tear ducts & wants us to see our pediatric ophthalmologist. So I called Children's and they had a cancellation tomorrow morning at 7:40. I wasn't excited about the time, but wasn't about to wait until November, which was the next appt available. 

Thankfully the wonderful people in Guest Services at Children's were able to get us a free hotel room in Northgate so I don't have to wake him up at 4:30 & leave at 5:30. 

We are expecting that he will need a very minor procedure in September to clear them. They just run a probe through the duct into his nasal passages but he has to be put under general anesthesia for it. Hopefully our ophthalmologist doesn't think it will take any more than that. 

I'll let yinz know tomorrow!

Chillin on the hotel bed. 

One more time...

So we met with the nephrologist who was very positive overall. The dilation in his right kidney is still grade 2, but vastly improved from what it was back in January.  She's not concerned with that one at all. His left kidney was downgraded from a 3 to a 2, but is much more obvious on the ultrasound that the right. I could even plainly see the difference. 

So she wants us to do another scan in 6 months and make sure it's continuing to improve. She seemed confident that it would be, but also cautioned that persistent dilation could start to impact how his kidneys grown & develop. It doesn't seem to be doing that now as they grew appropriately for the 3 months between scans. 

We also met with our Craniofacial Pediatrician who is also a geneticist. The last time we were up there, he had blood drawn and we began genetic testing to look for any indication of what may have caused his craniosynostosis, kidney problems, respiratory infections, ptosis, or blepharophymosis. She had our results back & everything was normal! PTL! Granted, this was a fairly limited test, but it was good news regardless. 

The Children's Hospital in Philadelphia is doing a research study that allows us to get additional testing without trying to fight our insurance company for approval, which they almost never give for this type of testing. So we figured we might as well go for it since they can use his previously banked DNA & we feel that in this instance, knowledge is power. It generally takes about 6 months to get those results back so we will see her the same time as Dr. Hanevold. 

She did say that she is very pleased with Arron's development. While he is slightly behind in motor skills, it generally doesn't mean anything in the long run. His cognitive development is right on track & is a much better indicator of his future development. So that was also encouraging. As a first time mom, you worry about everything your baby does (or doesn't do) and if it's on time or not. So her bringing that up unprompted really did a lot for me. :-) 

We appreciate your continued prayers for improvement in his kidneys & happy follow up appointments. Craniofacial still has a few things they're following related to his skull shape to make sure it doesn't interfere with his hearing or swallowing. 

In Seattle

We are getting his ultrasound now & then we will meet with his nephrologist after to discuss the results. 

Now to decorate!

Well this helmet fitting went way better than the first one! The first one he SCREAMED the whole time she was messing with it. This time he was a little fussy but nothing crazy & it needed a lot of trimming. It was nearly down over his eyes and his ears were pretty smushed. He was also very ready for a nap by the time we left. But here's the new look: 

So after paying for this helmet we've officially paid our maximum out of pocket expenses for the year and all future appointments/surgeries/medications/hospitalizations for the year are covered at 100%. Woo hoo! Although that means we've already racked up $4,000 in medical bills this year. Some of that was covered by Children's charity care program but the vast majority of the care has been outside Children's having now spent $1,200 on helmets alone. Crazy to me how insurance works that we were responsible for $600 of his $100,000 in bills for the surgery but at the same time pay $600 for each $4,000 helmet. Weird. But we are on the upswing now & hopefully it's good news on the 27th and we are almost out of this chapter of our lives where it feels like we live in Dr offices. 

One more picture for the road. And don't worry, we'll get some Sounders stuff on it soon!