Surgery for Kyler

Since just after birth, Kyler has been making very squeeky sounds when he breathes. He also has struggled eating and sleeping. The doctor's clinically diagnosed him with Laryngomalacia and Acid Reflux Disease. The doc wasn't worried about it because almost always it is a benign condition that they outgrow by 18 months.

But with Kyler having such bad RSV and the doc's at the hospital feeling like he needed more testing, I got a strong feeling he needed to see the ENT and have a test done that would let us know exactly what his airway was doing. My doctor listened to me, so we did the test, and we found out last week that his airway is so small and tight that the ENT thought he was one of the very few kids who needed surgery to fix it.

She wanted to wait a couple weeks to have him totally over the RSV and see if his airway looked any better. But since then, twice he has turned a blue/grey color while he napped and had an episode where he was really struggling to breathe, and we had to call 911.


Because of a dramatic-filled weekend with trying to get an apnea monitor, him starting to get a new cold, and his struggling to breathe episode, I took him to the pediatrician yesterday morning to try to have my questions answered. She spoke to the ENT, and the ENT called and said the surgery has to happen today or else he will have to be hospitalized until we do it to keep him safe.

So Kyler is scheduled to have his Supraglottoplasty surgery today to open up his airway. It is a guarantee two nights in the hospital (one in the PICU) and a possible need for a breathing tube following the surgery. The biggest risk is scar tissue or the possibility of a tracheotomy. The pediatric surgeon has done about 100 of these and is confident that all should go well. The procedure lasts about 15 minutes and they open up the airway with tiny scissors and a CO2 laser.

My biggest worry about doing it today is that it he has this cold. They assured me they would look him over before hand, and if they thought he was too sick they wouldn't do it. The doctors feel that a monitor is not safe for him, because they aren't worried he's going to stop breathing but more worried if the air is going through or not.


I think he is in good hands at the Children's Hospital with these doctors, but I hope you will remember him in your prayers in the next few days. Specifically, that they will know if he is healthy enough to undergo the surgery and of course that there be no complications. My other concern is that he can't eat for five and a half hours before the surgery (this kid is screaming and ready to eat every two hours). It is scary to put him through something like this when he is so little, but it has also been painful seeing him struggle so much to breathe, eat, etc. Every cold he gets could mean more hospital or 911 calls, and that's just not a good way to be living!

With all the love, concern, prayers, and big and small acts of kindness to me and my family, I have felt my Heavenly Father's abundant love. I feel so blessed, so loved, and I am so grateful to know we have so many people to count on and help us through hard times. We love you and will once again try to keep you all posted. Thank you for all you do for me and my family!