Ellie's Surgery

Tuesday was our long awaited appointment with the ENT, Dr Park, at Primary Children's.  After talking about Ellie's history of eating and breathing problems and then assessing her he said there was definitely some type of obstruction happening in her airway. To see what was going on he performed a micronasolaryngoscopy which is where he runs a straw-like camera up her nose and down to her vocal cords. Once down there he was able to see that she has severe laryngomalacia or a soft and floppy larynx. As she breathes and especially when she eats and cries her epiglottis and both sides of her arytenoid cartilage collapse in and obstruct her airway. Ellie showed off for the doctor by having one of her purple screaming episodes where she cries, can't breath, and turns purple until she pretty much passes out and then slowly recovers. He didn't like that at all. He said her laryngomalacia is severe enough it required intervention as soon as possible. So he squeezed her on his surgery schedule for today (Thursday). The plan was to put Ellie under general anesthesia and do a bronchoscopy which is a bigger scope that goes all the way down into her airways. This would allow Dr Park to take a really thorough look at everything and make sure there were no other problems. Then he would trim up the arytenoid cartilage to remove some of the bulk as well as to cause some scar tissue that will eventually help firm up the cartilage. He also wanted to stitch her epiglottis up so it doesn't flop down obstructing the airway. This surgery will not fix the problem, but is an attempt to lessen the obstructing until Ellie can grow out of it which usually happens at 18-24 months. 

So today was the big day. Ellie could only have breast milk after midnight so we weren't able to thicken her bottles with bananas which made for a couple really tough feedings for her. She could only have breast milk until 9 and pedialyte until 10 then nothing else to eat until surgery. I was nervous about the whole NPO thing because Ellie gets super mad when she's hungry and as mentioned above, she doesn't breath well when crying so I wasn't sure how it was going to go. We checked in at 11:30 with the expected operating time of 1:00. When we got back to the pre-op area they informed me they were running behind and it was going to be an hour later than expected. I was worried because Ellie was already acting hungry and starting to fuss. But I know thanks to the many many prayers being said on my and Ellie's behalf she settle down and was an absolute angel. She went to sleep and slept with very little fussing until they took her back at 2:30. You know she's a wee little one when the Children's hospital doesn't even have a gown that is close to fitting her. So they just kept her in her onesie.

Handing her over to the anesthesiologist and watching her carry Ellie away was incredibly hard, but I knew she was in good hands. The surgery took longer than expected due to her tricky little airways as well as the fact that she wouldn't breath on her own so they had to intubate her and put her on a ventilator, but overall Dr. Park felt like it went well. He said her epiglottis is an odd shape and just folds in half, so he thinks stitching it up was the best option even though it might initially make eating more difficult for her. They left her intubated and on the ventilator and admitted her to the ICU for close observation. They are hoping she will be ready to extubate tomorrow, but said she very well could be on the ventilator until Saturday. They placed a feeding tube to feed her through for the next little bit. I have to mention that every doctor here has been amazed that she has been tolerating oral feedings with this condition. It just goes to show what a fighter she is. Once again I am so grateful for my nursing background, especially in an intensive care unit, because all of the machines and tubes and wires don't bother me at all, but not being able to hold her and seeing her sweet little face scrunch up in a grimace is enough to rip my heart out.

It is killing Scott to be so far away during this. Thank goodness for facetime that allows him to feel a little bit closer. My mom stayed home to take care of the older kids. She told me Miles had a hard day today. He kept going to the living room and looking around for Ellie. First his Daddy left on Sunday, then Grandpa left to Scout Camp, and then his Mama and Baby disappeared. Poor little guy just doesn't understand what is going on. Hopefully our stay here will be short and we can get back home with a new an improved Ellie.