three blog posts all composed in my mind. This week, I have fallen into bed exhausted so many times that just taking the time to write this quick update seems like a huge sacrifice. But I really do need to get an update out.
So here are a few discoveries we’ve made in the past week.
Discovery 1: We won’t be dilating Patrick’s bowel after all.
…… in fact, we won’t be doing anything about the dilation and narrowing. Why? Well, Patrick’s surgeon asked that we have a barium enema done to get a better picture of the narrowing before putting Patrick through an endoscopy. In the images I posted, the stomach got in the way of the image. So, they hoped that by putting the contrast in from the other end, they’d be able to get a better picture.
And they at least got a different picture. There was no evidence of a narrowing. Just a skinny colon and a fat duodenum. The best guess is that the small intestine is just so big that sometimes the weight of it pinches things off so they don’t move. So, good news that there may not be a stricture. We’re glad he won’t need a risky procedure. And it’s a relief to not have to worry about going from a few dirty diapers a day to 10 or 20 or more.
However, it’s kind of disappointing to have no other recourse. Surgery is far, far to risky and uncomfortable to be worth it. And medications are risky, too. So, for now, we’ll just hold the course. We’ll take the imaging to Seattle Children’s when we go next week and get a second opinion on the problem. However, as Dr. Horslen in Seattle has been talking to Dr. Jackson all along about this, I don’t know that anything will change.
Quite simply, this is a problem that transplant would hopefully fix. And we have to decide if trying for a temporary solution is worth what it would cost Patrick.
Discovery 2: Patrick loves the garden hose. His current favorite job is watering the flowers. We had a miraculous Saturday a couple of weeks ago where I got to plant all my gardens. Now, I’m hand watering them at least once a day. And Patrick often comes along to help. He doesn’t think I do it right and will take the hose and push me away saying “nya nya nya”. Then, he’ll soak the garden and himself.
Discovery 3: Labs don’t always give clear answers. I got lab results yesterday about Patrick’s liver. They confuse me. The good news is that his liver enzymes are back to normal for the first time since last fall. Careful management of his lipids has gotten us there. However, his clotting factors, a symptom of liver problems, are getting worse. This means he’ll bleed a lot more easily. And, well, I don’t know quite what to make of that. We’ll get a second opinion on that, too.
Discovery 4: Even toddlers can have car lust. Ok, well, we all knew that Patrick’s a car fanatic. But yesterday I combined two favorite things… cars, and the hose. We washed the cars yesterday. While Patrick’s tubes were off, I pulled them up on the lawn, then filled a bucket, and handed Patrick a rag. He LOVED it. He walked around the cars washing from time to time, admiring most of the time. The hose was a pretty fun element, especially for putting on the cars. But the cars parked together on the lawn was irresistable.
Discovery 5: It takes 3 days for Patrick to clear barium contrast from his system. It’s very thick stuff. That was a challenging couple of days. We’ll leave it at that. Can’t help but wonder what that says about his motility. We’ll talk about that with the docs, too.
There’s a lot more I’d like to share.. but I think I’m going to leave these discoveries for now and hopefully get another blog or two soon with the other many discoveries I’d like to share.