When Zane was born he had a hard time breathing. He took short and fast breaths. Basically he looked like he was running a mile all of the time. This made him a high aspiration (inhaling food) risk everytime he drinks out of a bottle and also raises serious concern that he would stop breathing and need CPR at some point.
Our ENT did a scope of Zane’s throat back in the first NICU and diagnosed him with laryngomalacia.
What is Laryngomalacia?
There is a lot of great information on this website: http://www.copingwithlm.org/What_is_LM_.html
Laryngomalacia is a soft floppy larynx due to softening of the cartilage.
It means he squeaks when he breaths, is a noisy breather, and has difficulty feeding.
They said it would be good to incline him all of the time (so a swing, nap nanny, putting pillows under one end of his mattress), its better for him to sleep on his side or back to help him breathe better as well.
The Coping with Laryngomalacia, Inc. soooo generously donated us a Nap Nanny! What they do is amazing! They also mail out expensive formulas to families who struggle with feeding these types of kids. We are so grateful for the organization. (Here is a list of services they offer: http://www.copingwithlm.org/Programs.html )
Zane spends atleast 50% of his day in this nap nanny! It is an absolute life saver!
What is a larynx?
Here is a basic anatomy of the esophageal area:
The epiglottis and larynx is what is floppy for Laryngomalacia. But Zane also has Trachea Malacia so if you look at this diagram…. he has the malacia further down as well which makes it even harder for Zane to breathe.
When Zane was on a ventilator for a week after his neuroblastoma surgery…. his laryngo area became very swollen. They could not get his breathing tube out because of how bad it had gotten. They gave him lasix, steroids and epinepherine in order to bring the swelling down to remove the tube.
After we brought him home the swelling remained a little bit there. I took Zane back to his ENT two weeks after coming home from the NICU and he was put on steroids for a week. When I brought him in… his breathing looked this bad: http://www.youtube.com/watch?v=3XXdZ5zyz2I&feature=player_embedded steroids improved things, but he was still having trouble.
A week later he was admitted to the hospital for Opsoclonus Myoclonus Syndrome, but at the same time they were able to see his airway on a CT Scan (they scanned him again looking for tumors) , they could also tell by looking at him that he was still having severe difficulties breathing. They talked to us about giving Zane a tracheostomy, which is when they put a hole and tube into his throat to help him breathe. It would bypass his larynx and go into his trachea. This would give that floppy area time to heal and allow him to finally breathe. They put him on IV Steroids over the weekend, scheduled a brochonscope under anesthesia for the following Monday. The consent form said…. possible supraglottaplasty, possible balloon dilation, possible tracheostomy. A trach nurse came in and showed me what was all involved with taking care of a trach and this would limit a lot of things he would be able to do. I was really scared, but felt if he could breathe better, he would feel better. So I signed the consent and off he went.
I waited in the surgery waiting area when they called me from O.R. they felt his trachea swelling had gone down a lot from the IV steroids but they did diagnose him with trachea malacia at this time. They felt the balloon dilation wouldn’t help and they felt the swelling wasn’t bad enough to put in a trach so they went with the supraglottoplasty. This was best case scenario and I was very thrilled! He went to the PICU (Pediatric Intensive Care Unit) for 3 days and came home. The healing process was a little hard to watch at first because it looked painful to swallow or cough. He collected a lot of mucus which he drooled and choked on. I was really leary of it improving his breathing… i was worried “Was it worth it?” They sent a suction machine over after the visiting nurse saw how bad the mucus situation was. That helped things a little bit. I’d say after 1-2 weeks suddenly his breathing was SO whisper quiet that I found myself constantly checking to make sure he was still breathing. Problem SOLVED! Atleast for now… it has dramatically improved his breathing and I no longer worry about him stopping breathing on me. He is on an apnea monitor over night that is VERY loud so if he stops breathing it will alert me. I also taped up the steps for CPR above his changing table in the event I need to do that, I am ready to follow the steps. If I’m panicking I have the steps in front of me for back up.
This is how his breathing looks now:
What is a supraglottoplasty?
Basically they trimmed down his epiglottis allowing air to always flow through!