Buffalo Children's (WCHOB) called with Nolan's surgery time. We are to check in at 6:30am and the surgery will be at 8:30am. This means we will have to leave our house at 4:30am, unless we opt to stay at the Ronald McDonald House in Buffalo. This would be my preference, because it would let all of us sleep a little longer, and not have to drive through ice and snow in the pre-dawn hours.
Nolan is having two procedures (three, really, but one doesn't involve any cutting). First, a bronchoscopy will be performed again to verify the laryngomalacia and to verify no other anatomical defects are present. Then the ENT will proceed with a lingual tonsillectomy.
Wait a minute, you might ask, weren't Nolan's tonsils removed in April? As it turns out, we are all born with three distinct sets of tonsils: the pharyngeal tonsils (also known as the adenoids), the palatine tonsils (what we refer to as "The Tonsils") and the lingual tonsils.
The ENT will be "shaving down" Nolan's lingual tonsils to help improve his airway. This has a similar recovery time to traditional tonsils, but we probably won't notice much of a difference because of the other, main surgery he is having performed.Nolan's laryngomalacia means that his airway is floppy and occludes the larynx when he tries to breathe. A normal larynx looks like this:
The epiglottis is barely visible, and the vocal cords and airway are plainly visible (the vocal cords are the "V" shaped cords in the picture above).Nolan's airway looks more like this (laryngomalacia):
When he tries to breathe, the aryepiglottic folds collapse into his airway, creating an apnea. The general anatomic configuration of this area of his airway also creates a lot of noisy breathing. For Nolan, this mostly occurs at night and causes sleep-disordered-breathing. We can now hear stridor during the day, especially in certain positions (when he is looking down at something).To fix the laryngomalacia, the ENT will use a CO2 laser and "trim up" the aryepiglottic folds, so that they cannot collapse into his airway anymore. The scar tissue formed by this procedure will also help strengthen the floppy nature of his airway.
Obviously, mucking around in an airway is a Very Serious Thing, and the little guy will remain in the pediatric intensive care unit (PICU) on a ventilator for a period of time, until the swelling comes down and we are sure his airway is stable. He should be extubated on Wednesday morning or Thursday (at the latest).
There are a few risks and potential side effects of the procedure (including temporary aspiration issues), but I'm not going to go into those, because they are not very common and not likely to affect our little guy. This surgery does cause quite a bit of worry and stress for us, though.
I probably will not update the blog until we are home from surgery and the little guy is happily sucking away on popsicles again. We appreciate all your prayers and support!
10 comments:
Sending you load of popsicles and ((HUGS)) from Chicago.
I will be thinking of you all. And of course, a special prayer will be sent up to the Big Guy for you, too!
I'm thinking of you!
Thanks for the warning about the photos. I'm usually good with these things, but knowing that it concerns Nolan's surgery made it hard to look at. It's all so interesting to me because X has similar issues.
Isn't RMH wonderful? We lived there for five months after X was born. It really was a home away from home. Sounds like a good idea to avoid the very early morning drive through the snow and stay there, if you can.
I can imagine how stressful this may be for you, and I'm sending lots of love and best wishes for a successful surgery and speedy recovery.
Praying for you all,
Julie
You are in my prayers. Good luck Leah!
Thinking of you all and praying hard. I can't wait until it's over for you.
Sending many thoughts and prayers your way!
Hello, I hope it's okay that I'm contacting you. I was looking for pictures to post on my blog about my son's case of Laryngomalacia, so our family could see what is actually going on, and I came across your pictures and this post. I don't know if you'll even get this comment at this point because it has been a month or so since you've posted but I wanted to try to contact you.
My son is going in for what sounds like the same surgery your son had, just the supraglottoplasty. I was wondering if you have any advice or could give us an idea of what to expect. We have just completed our sleep study and found that my son has severe sleep apnea so they are kind of rushing us into surgery. We go in this Friday. I'm very scared and I don't know if that's just because I'm his mother. He's only 3 months old and its hard for me to be comfortable to "put him under" at such a young age.
How is your son doing since the surgery? I noticed that he also had his tonsils taken out, did that seem to cause him more pain than the supraglottoplasty? How long did you have to wait before getting your second sleep study? Did you have any complications after the surgery? I've been told that there is a 90% sucess rate with this proceedure and that makes me feel a little better but 10% is still high. Was there anything you feel like you would have done different?
I know that I have a lot of questions here. If you don't feel comfortable answering any of them I understand. If you have time feel free to contact me at cheris.blogstuff@gmail.com. We're going in this Friday, the 18th, so if you don't get this in time that's more than okay.
I hope your son is doing much better and healing quickly. If nothing else I want to thank you for posting your experience. I know it's a "common" problem but we haven't found anyone in our area who has experienced this at this level. I think our older daughter had a less serious case of it but she out grew it at 6 months. Thank you SO much for your time.
- Cheris
Cheris, I tried to send an email to you. I hope you are hanging in there! Our home email address is dlefler(at)stny(dot)rr(dot)com
thank you so much for our best knowledge
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