Tuesday, September 28, 2010

Off we go again.

Miss Sunshine and I are headed out to Chicago this afternoon again. Back to Shriner's for another surgery. It's a "minor" surgery (is any surgery really minor, though?) - she's having her ear tubes replaced. I may have mentioned that she lost the right ear tube back in May. Well, the left one came out a few weeks ago. This will be her third tube in the right ear - she had the one originally placed last August, and they replaced that one in January during her cleft repair - and the second tube in her left ear. We will likely be dealing with this at least yearly for another five or so years. Our ENT here in Wichita told us at the time of her initial ear tube placement that studies have shown that it can take 7-8 years for the muscles of a cleft palate to learn how to correctly do their job and keep fluid out of the ears. In that time, a cleft affected child will need ear tubes to reduce fluid in the ear and reduce the chances of hearing loss. When Miss Sunshine's first set were placed, we were told that there was some minor scar tissue buildup from excessive fluid in her right ear that the doctor was able to remove, and we remain hopeful that this has not affected her hearing, although there is that possibility. We really won't have an accurate idea of the hearing in each individual ear until she is much older and can be more easily tested. What we do know for now is that, even with fluid in her ears (which she definitely had at her last hearing test) her overall hearing (hearing combined with both ears) falls within normal range. So she is not considered to have any hearing loss, which is a real possibility with cleft affected children due to the excessive fluid buildup. And also why we are trying to stay right on top of those ear tubes - to keep it from becoming a reality.

I am also hopeful that once this newest set of tubes is placed, her pronunciation in her speech will become more clear. Right now, she can hear, but everything sounds like it is underwater because of all the fluid. So she is hearing, but not clearly. Hopefully once the tubes are placed she will be hearing clearly and will start refining her speech. For instance - she has started saying "yes" but it comes out "yesh" - and I believe that is in large part due to the fluid build up in her ears. We know she can make the S sound correctly, because she says "SSSSSS" when you ask her what sound a snake makes. So I believe she simply is not HEARING it correctly at the end of words - and therefore the incorrect pronunciation.

I do know that the improvement was immediate and astounding when her first set of tubes was replaced, and since she has had fluid build up for several months in both ears at this point, I think we will see the same kind of reaction. Unfortunately, I also remember that she became a much lighter sleeper after the first set of tubes - and I have a feeling it will be a similar experience this time around - which I am not so much looking forward to. But we know that it is in her best interest - so she and I will be making a flight to Chicago today, having surgery in the morning, and flying back tomorrow afternoon. So if you all could say some prayers (or,you know, whatever it is that you do!) that things go well on our trip and during her surgery, and that mommy retains what little sanity she has left, I would greatly appreciate it!


  1. Hi. I found your blog off one of your posts to the BabyCenter Community group. Our little girl had a CP that was repaired in Feb 2010. We went back in Sept. for her team visit and found out she needed a tube replacement. We were put on the waiting list. I decided to check into getting the tube done locally b/c as you know, traveling alone with a little one is difficult. (She turned 2 yesterday.) I thought we could get it done here cheaply, since we'd met our deductible for the year and canceled our place on the waiting list. Then on Friday, the surgery center called to tell me that our 20% portion would be $1000. Ugh! So, instead of sitting in recovery at the local surgery center this morning, I am calling the Health Dept. to get our shot record faxed up to Chicago. We are going back on the waiting list.

    I saw this post of yours and was surprised about what you said about the scar tissue in ears. Abbey has had lots of fluid, but not lots of infection. Did they tell you that the fluid can cause scarring that can lead to permanent damage?! That is scary! I didn't know this and am worried about it. I wanted to double check that I was reading that right. I also wanted to say hello, since it seems we are on similar paths. Will you email me with more info on the scarring thing? Thanks.

  2. Hi Marcie! Sorry I don't have your email, but I'm happy to chat with you!

    I'm not 100% positive what causes the scar tissue. In Miss Sunshine's case, she had very thick viscuous fluid in her ear that basically irritated it and caused scar tissue to form. The ENT was able to successfully (we believe) remove it with no affect to her hearing. In some cases, the scar tissue is not able to be removed and it can cause hearing loss. It's apparently pretty rare but it happens. When her tubes were replaced this time, there was no scar tissue present from what I was told. So apparently it is more the consistency of the fluid than anything that causes the scar tissue buildup - our ENT said that the buildup she had as young as she was is actually pretty rare. (The irony of that being that the only ear infection she ever had was in her LEFT ear, not the ear with the scarring!) And her scar tissue buildup was minimal so it should have very little, if any, affect on her hearing at all.

    Now for the good news for you - just to let you know, we were wait listed for her ear tubes at Shriner's as well - but within a week of me sending off her current shot records I had a phone call with a surgery date for the following week! They move quick on those. Oh, and you may want to bring an extra bag. They loaded her down with so much stuff (toys, a pillow and blanket, books) I could barely fit it in our bag to head home... :). They are most certainly wonderful wonderful people there at Shriner's.

    Good luck with your daughters replacement! How is her cleft healing? Our repair was done in Jan of 2010, so we are only a month ahead of you!