I’m back with Landon! It’s been a very busy few days. Since Sunday night I’ve driven 1,000 miles. In addition to being in 4 states, visiting familiar faces, learning new things, and trying to make the brief visits home meaningful, Nolan has been pulling some fast ones on us.
He woke up on Tuesday very cool. It took much of the morning to warm him up to 92 degrees. D knew what to do, and what to watch for. Temperature regulation issues are a daily battle, but sometimes the extremes still catch us off guard. That wasn’t the only trick up his sleeve. He also had some focal seizure activity. It didn’t require a rescue med, and despite the seizure he went on to have a very good, smiley, alert day. That’s just another area where we prefer no surprises. But wait – there’s more! Just today, Nolan held his pee for 18+ hours. Under normal circumstances a 24 hour dry spell might merit a quick ER trip for a straight cath. But we knew he was hydrated, and we also know the boys hold it. So after a long dry day, we were all “relieved” when Nolan stopped the strike. And he’s the “easy” one right now!
As for Landon, he is still improving. It seems he is very stable, and breathing well. He keeps passing his breathing tests with flying colors, and is passing his daily sprints. But…the right lung still isn’t clear, and some of the junk is being stubborn. If you’re wondering how long it will take to get that clear enough to get him home…you aren’t alone. Today’s update was a positive one, but included no projections on timing. I am hoping and praying we can extubate tomorrow or Friday, the get him home Saturday or Sunday.
In the meantime, I had a huge smile when I encountered these curls upon my return.
Talk about a good hair day!
A special thank you to Papaw for taking such good care of my buddy. I love you both dearly!
I admire you with two ,I have a son with liss and I know this blessing can be a handful sometimes ,you are doing a phenomenal job,we just had a two week sta that ended up in a gtube surgery.Keep your head up you doing a good job.