Things got really intense today. Here’s our journal entry. 

We’ve been waiting for ENT and surgery to get together to evaluate Navy since Sunday. This morning we got word that surgery decided they don’t need to get involved. We hadn’t seen our care team so frustrated, but they really went to bat for Navy. A few hours later ENT showed up to put a scope down and see if they could find a blockage or a reason why she stops breathing occasionally. We were told they would start in a few hours, so we went to the Wednesday parent meeting and drug Kai along.

The parent meeting for the week was led by a hospital chaplain to focus on spirituality and faith. Steve made a comment about finding a balance between hope and the lack thereof when we recognize miracles and know they are existing for Navy, but also dread (and know) a phone call of bad news awaits. A few minutes later, we heard them call a code blue for Navy’s bedspace. Steve and I locked eyes, and he took off running. I picked Kai up like a football and ran after him. Right before entering the room, I realized that I didn’t want Kai in there, and I just turned to a worker I didn’t know and started sobbing. Somehow she put together what was going on and in broken English said, “you go, I take him.” 

I handed Kai over and ran into the room to find about fifteen doctors and five nurses huddled around her. Then two people wheeled in the tiniest defibrillator and readied it for use. Steve stood at her bedside and talked to her, but I just stood in the back crying. I was too scared to see her blue. I watched her monitor instead and saw her oxygen flatline and her heart rate get slower and slower, dropping down to the 20s. She got up, but then dipped again and the scare continued. Steve saw doctors put masks on her, apply pressure to her neck, and saw live footage once they decided to put a scope in again. He also saw Navy straining deeper than before to breathe, which was his scariest visual. In these moments I thought we were going to lose her, but the doctors explained there are still a few more levels. A positive: she didn’t need compressions or the defibrillator or anything like that.

The good news is that because of the code blue, ENT, surgery, and her care team all were at her bedside and able to finally coordinate. So, that’s one way to get attention. And because she had an “episode” while the scope was down there, it’s confirmed that she has tracheal malasia, or floppy airway. Tomorrow she’ll go into the operating room where they’ll put her under and put in a longer scope to look at everything. It’s taken four days, but it only took this episode to get her on the schedule for the OR. 

Until tomorrow, she now has a CPAP to make sure her airway stays open until we come up with a new plan. We don’t anticipate any episode before the OR, but we are also praying none happen because they would need to intubate her if so. Since the chaos, she has been able to really rest. I held her for an hour and it was soothing for me, and seemed for her as stats normalized and she fell asleep. Steve and I also were able to sift through our feelings and emotions to reset and ready ourselves for tomorrow. We love this little girl. ??♥️