Let’s start by being thankful I didn’t type an update at 9:30 this morning. It would have been very negative, and a lot of things were running through my head. So even if this one seems “down”, just know that we’ve climbed back up quite a bit today.
Landon didn’t have a great morning. He has continued to fool us. He was keeping his Ox level up on BiPap, and his respir rates were good. But his blood gas let us in on a little secret he was keeping…he was losing a battle in regulating his levels. In fact, his CO2 had spiked up to 89. They tested again to be sure it wasn’t a fluke. The word for that is respiratory acidosis, and if you or I felt that way we might be short of breath, or could communicate that we were feeling confused, tired, off, etc. But another side effect is sleepiness…and Landon just quietly got sleepier. He earned his way on to a breathing tube, and I got upset this morning. It wasn’t just the tube, he’s had that before, and I knew when we showed up this time it might be possible again. And plenty of people in his condition would have higher CO2 on BiPap and also need to move to a ventilator. So it wasn’t out of the ordinary.
It was discouraging to move backwards on day 3, but it was also scary that he was still in trouble and we didn’t know. He is a complicated kid, and even in a children’s hospital on monitors, with tests, and a machine counting his every breath, this snuck up on us. I think it was just a reminder that I’m in over my head in a lot of ways. Some days I feel a bit like a kid with a bucket trying to empty the ocean. I’m not equipped. But I’ll keep scooping.
Despite getting discouraged today, some good things have also happened. In contrast to his very sleepy self from yesterday, he has been far more alert today. His eyes are open a lot, and he looks around when I talk to him. His CO2 is back down to normal. He has started small amounts of his food via pump. He has listened to his brother on video, and squeezed my finger. This picture caught him looking around. Scoop.
Meanwhile, back home, Nolan had a great day. He had one of his best vision therapy appointments ever! I have a photo of him touching the star with his right hand, and video of him touching a Frisbee with his left. Thank you to Darra and Kathy for capturing this! Scoop.
Overall, once we switched to the ventilator, Landon started making some good improvements and the day ended up with a very positive feel. As a family, we have a plan in place for the next week to help get everyone where they need to be. Everyone is holding up well at home. All things considered, Landon and I are holding up here, and as of 6:15 pm, we’re feeling very optimistic about tomorrow. Scoop. Scoop.