Monday, January 21, 2013

Waiting, Waiting, Waiting...

So, there was so much to cover in that last update that I forgot something pretty big.  Actually, I probably didn't mention it because I didn't think it was going to be anything really worth mentioning, but now that I'm in the "waiting for results" phase, I can't stop thinking about it.  I figure it couldn't hurt to update about this and get a few extra positive vibes and prayers heading Ryan's direction today.

When we went to the pediatrician on Wednesday, I mentioned that it often seems like Ryan's fontanelle (the soft spot at the front of his skull) seems like it's bulging and pulsating.  I've brought this up before to ER doctors and the PICU doctors, but none of them were ever concerned because he doesn't have any other symptoms of anything serious.  But, ever since that last head ultrasound before we left the NICU where the radiologist said he saw "mild hydrocephalus", I've always had this nagging feeling that we should be looking more into that.  So I brought it up, and she agreed that it wouldn't hurt to order another head ultrasound. 

The soonest I could get him in was this Saturday, which in hindsight wasn't the greatest idea because there usually aren't as many people working on the weekends, so I should've realized we wouldn't get the read out until at least Monday.  And of course today is a holiday, so who knows if it'll happen today.  The ultrasound tech was really nice and asked lots of questions about Ryan's history.  When she realized he was a micropreemie, she seemed extra sympathetic.  I told her he didn't have any brain bleeds in the NICU, so we were really lucky.  As she was looking at the images of his brain, she started to get more, I don't know what to call it...empathetic?  At the beginning, she mentioned that the radiologist was in Irvine (we were at HOAG in Newport Beach), so he wouldn't be able to read it today.  I said that was fine, but then her attitude started to change.  Let's just say she had the world's worst poker face.  As I could see she was getting more and more concerned, I started asking more and more questions.  To the point where she was finishing up and she said, "I think I'll call the radiologist and see if he can look at these images online and let you know what he sees." 

After quite a wait, she came back and said that the radiologist looked at them, and definitely sees hydrocephalus, but he can't tell us about the severity of it because he would need to compare these images to the last ultrasound to see if it has gotten better or worse.  Which made sense, but really irked me because I HATE WAITING.  So I asked if I could somehow get a copy of these images to take to CHOC and have someone there compare.  I was on a mission, and if I had to drive the disc out there and hunt down a radiologist that had access to Ryan's previous images, I would do it, lol.  Luckily, common sense made it's way back into my head as I was waiting for them to make my CD of the scan, and I texted one of Ryan's former primary nurses from CHOC.  She let me know that there wasn't anyone at CHOC to look at it that day, and told me to be sure to have a pediatric radiologist who has experience with ex-preemie cases to look at it.  Then a friend who's also a pediatrician told me that they wouldn't have let us go home if there was something emergent or serious going on, so that was reassuring. 

My hope is that this tech was just really bad at overreacting, and the radiologist just saw mild hydrocephalus because we already know they've seen that in the past.  I've already called and left a message at Ryan's pediatrician's office this morning to see what we need to do to follow up and get the read out.  So as I'm waiting for that call back, I'll be asking for lots of prayers that our little boy's brain is on the road to growing normally and that whatever they saw in the scan was very mild and improved from the last scan.  I'll keep you all posted as we find out more.  Thanks!

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