Airway issues.

Over the past week, Harlie has been having what I would call, episodes of respiratory distress. Just walking from room to room in our house was enough to cause her to start working very hard to breathe, retracting, abdominal breathing, and desatting (her oxygen saturation would drop from mid 80s to low 70s, sometimes high 60s). While she would recover fairly quickly once sitting down and catching her breath, it was still very unsettling. And it was very strange, because there wasn't a reason I could see. Her lungs sounded clear and she showed no signs of getting sick.

Her first episode was Thursday night. Since then, the episodes happened more frequently. And by a few days ago, she required oxygen around the clock, and her increased work of breathing was obvious, even when she was sitting calmly.

So, on Tuesday, I took her to see her pediatrician. She was not comfortable with her work of breathing, either. And she said it sounded all upper airway, like it was obstructed, and she needed to be scoped this week.

So, we went home and I emailed her ENT in DC. I told him what was going on and asked him if he could see her this week. He said I could bring her at 1pm the next day, Wednesday. Awesome!

We've also been noticing that her heart rate has been dipping unusually low lately. She has a pacemaker and it is supposed to keep her heart rate above 80bpm during her awake hours. We have seen her heart rate as low as the high 40s and low 50s during those hours. Since I was going to DC, I thought I would see if I could get in to see them, as well. Luckily, they could.

I was definitely worried about Harlie trick or treating that night. I didn't want her to keep getting out of her chair to go up to people's doors. I did not want her to have an episode while we were out. So, I asked our neighbors to please ask for candy for her. Which they were happy to do.

Harlie was Moana this year and Cooper was this pumpkin bobble head thing. Murphy was... well, I have no idea. He wore a silver drama looking mask , and was gone before I even got outside.

On Wednesday morning, we headed to DC for her appointments. We have a little superstition that if we are prepared to stay overnight, then we get to come home. But, if we aren't prepared to stay, then she will get admitted. So, we packed a bag.

Caylee (one of her nurses) went with us. Her ENT scoped her (put a camera down her trach) but saw nothing obstructing her airway below the trach. So, he said that there could be a granuloma or scar tissue obstructing around her trach tube. In order to know, she needs to be scoped from her mouth or nose. In order to do that, she needs to be under anesthesia. He said she was working too hard to breathe. He said he believes her trach size is too small. She's just not getting enough air.  So, he said he wants to scope her Thursday morning, and admit her today.

We weren't surprised. Listening to her breathe on the drive up was stressful. Honestly, I was relieved he was admitting her.

She wanted this baby care kit from the gift shop. She cracks me up.

Coloring in the emergency department (we had to get admitted through the ED).

We probably got to the ED about 4:30pm. And hung out there until about midnight. Then we got put on the heart and kidney unit about midnight.

Ahhh, finally some peace and quiet. That ED was pure chaos!

I don't know when she will go to the OR to be scoped, but they are assuming close to 7am. I really hope this is something easily fixable. I'll update when I can.

Thank you so much for your continued support. We would be lost without it!

Much love,
Christy xo