Eleven weeks 4 days old

When we arrived at the hospital today, it was evident that Evan was really struggling to get a good breath. During rounds, they ended up giving him another racemic-epi. The racemic causes his heart rate to soar - it was over 200 when we first arrived. It slowly settled back down over an hour though. Since Evan was working so hard, the doctors were able to move the procedure up to 11 am (from 12:30 pm).

The operating room called us down around 12. I'm glad that they moved his procedure up since the waiting room was full and I could hear others talking about how backed up the doctors were with procedures.

The procedure took about 45 minutes during which Evan was sedated and intubated. After the procedure, we spoke with the ENT doctor and the NICU fellow. The NICU attending and fellow were present for the procedure so that everyone was on the same page. The ENT doctor said that when Evan was wheeled in to the operating room, he wasn't sure if they would be able to do anything other than look since he was working so hard to breathe. If he hadn't had this procedure today, he was definitely going to be intubated.

During the procedure, the ENT doctor was able to do two balloon dilation treatments. The balloon dilation helps open up the airway. The doctor was happy that Evan was able to tolerate the treatments, especially since he was in rough shape this morning.

The official diagnosis is that Evan has subglottic stenosis. Again, turning to the trusty internet for the definition (http://www.chop.edu/service/airway-disorders/conditions-we-treat/subglottic-stenosis.html):

Subglottic stenosis (SGS) is a narrowing of the airway below the vocal cords (subglottis) and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway. This narrowing is often caused by scarring in the larynx just below the vocal cords but may also involve the vocal cords and affect the voice as well.

It is believed that this was caused due to the intubations from the surgeries Evan had recently.

The doctor was very pleased with how Evan looked after the balloon therapy. We won't know if it was successful until Evan is extubated. He will stay intubated for a minimum of 2-3 days while the swelling goes down. When he is extubated, the ENT team will be at the bedside to supervise. The NICU doctors and ENT doctors will have to be in communication as they don't want to leave the tube in too long or too little.

So we're kind of on hold right now. Andrew and I are relieved to have a name for what Evan is dealing with. It's so hard to see him immobilized (due to the fentanyl while he's intubated) and intubated. I know it's going to help him in the long run, but it's a hard picture to digest when he was home just 5 days ago.