Wednesday, May 16, 2007

Random Intermittence

Ethan is certainly healthy and happy! That's the most important thing. Random intermittence of electrodes is another.

We're home from our visit in Cincinnati. Once again, we were reminded of how lucky we are to live only 3 hours away. One of the nurses asked where we were from and replied "Oh, you guys are close", to which I replied "No, we're 3 hours away"! She is used to meeting people from all over the U.S. and the world for that matter. Children's in Cincinnati is rated in the top 5 pediatric hospitals in the country. Another reason to feel lucky- I'll take it!

Ethan was sedated for his CT scan. He has undergone anesthesia 3 times but this was the first time I watched. I had no idea how hard that was going to be, silly me thought it'd be no big deal. Wrong! It made me teary-eyed and frightened. Note to self: never watch that process again.

His scan looked normal. The implant is exactly where it should be and there are no tissue changes around the implant. That's great news! I was totally relieved. My paranoia took over during the scan and I began to wonder if the reason things aren't firing correctly is because there is something new and unusual in the region of the implant. Thank goodness that's not the case.

The audiologist determined that some of the electrodes that had dropped earlier were back in action and one new electrode was now shorting out. The intermittent nature of the problem has everyone confused. The surgeon said that with this implant it is happening in less than 1% of the cases. Ethan has been a statistic since the moment he took his first breath, so we're not really surprised to hear that news.

We don't have many options. The most important thing is that he is comfortable and able to hear and until either of those goals is not met we will just wait and see. If he were to be re-implanted, then he would go without sound for about 3 weeks. Not ideal, but luckily he has and enjoys sign language, so we'd hopefully not see him feeling too much frustration.

We're still tabling the bilateral until we all feel more comfortable about Ethan's balance and motor coordination. Basically, another implant could either really help or really diminish his balance, which is extremely tentative anyway. It's a scary risk to take, so for now we'll just say no thanks. Ideally he will gain better motor control this year and then we'll all feel better about making that decision down the road.

There is more to say, but for now I'm going to leave it at that and go have a snack with E-boy.


Kauan Tyler's Mom! said...

Hi Heather!!

Thank you so much for your kind words!! We are also very confident and excited about Kauan's implant, I think that he's gonig to do great! I can't wait!!!:0)

John Tracy is really amazing, I don't know what I would do without their help, we're very thankful that Kauan is having the opportunity to be part of the JTC family! (all of us!)

I can't wait to see him hearing and speaking, Gosh, that's something I'm sooo looking forward to, and this idea of a blog is amazing because you can connect with other parents, like you, and share everything - the best part is that they understand you so well, because they've been through all that as well!!

It's like a virtual support group!! :0)

Congratulations to Ethan, I wish you all the best!

Keep in touch!

Drew's Mom said...

Glad to hear that the CT Scan went well and that everything is working medically and that the implant is in the correct place. So thankful you are working with Cincinnati - they are wonderful!

Keep us posted on little Ethan!

Eileen said...

Hi Heather! Overall, it sounds like the scan went pretty well. I am with you on watching the procedure thou, I was once kicked out of the ER room when they tried to give a spinal tap. Just too much to watch..a violation I guess. Of course that is nothing compared to what you went through. I think the fact that he is so happy and is doing well is what you should focus on for now and wait and see what happens. I know easier said, and it is so hard. However, he is so beautiful, and from the pictures it is so obvious he is so happy and active and making gains in most areas. So enjoy that snack with your little E Man and give hime extra hugs and kisses. Sending extra good thoughts your way.

Jason said...

Lets cut tot he important stuff - So what was the snack?

As for balance - the honest truth is I'm not sure. Tom was on a curve of improvement from discharge and its still going. Nicky and I don't remember a big change around the second implant - he was still pretty wobbly but had the confidence to walk on his own by then.

Keep the photos coming - I glanced over Nicky's shoulder while she was reading here and asked who had put a photo of Tom up!

Jason, Nicky & Tom