For the first time since we’ve been home from the hospital, we had a somewhat dramatic morning. Jason woke up around 6 am to discover a blue Sam sleeping in his crib. I’m not speaking metaphorically here—Sam was not depressed but physically blue, especially around his mouth and eyes. When Jason hooked him up to the pulse-ox, he found that Sam’s oxygen saturation levels were in the 60s (as you may recall from earlier posts, Sam’s O2 level is supposed to be at least 75, preferably in the 80s).
Before you start to feel as panicked (as we did), let me assure you that right now, Sam is pink and snoring happily away in his vibrating chair. To make a long story short, we think that Sam’s upstairs oxygen equipment failed last night. He has an oxygen generator upstairs in his bedroom and a regular tank downstairs, and within 30 minutes of switching him from his upstairs to his downstairs oxygen, his sats perked up to the high 70s. Unfortunately, he was probably satting in the 60s all night, so it took him a little while to recover this morning. We called his cardiologist, and she said that as long as sats remain stable on the downstairs equipment, we don’t need to bring him in.
On the happier side of things, Sam has made some good progress this week with his oxygen (last night disregarded). For the first time, I was able to lower his oxygen yesterday to 1/8th of a liter, and his sats remained stable in the low 80s! This is significant because our doctor thinks that we if can get him to 1/8th of a liter, we may be able to increase one of his medications and take him off the oxygen altogether.
While the oxygen may not seem like a huge deal compared to everything else he’s been through, it seems to become a heavier and heavier weight each day to all three of us. It causes Sam significant nasal congestion, which upsets him and, ironically, prevents him from getting the oxygen he needs. When we suction him out daily, he screams his head off and his nose usually starts to bleed. But if we don’t suction him, his sats drop to the 60s because he can’t breathe properly. It’s a bit of a double-edged sword.
Also, while I know that Sam won’t remember any of this, I still worry about the effects of his being on a "leash." I keep thinking about how they train circus elephants by keeping them on short leashes when they’re babies; that way, when they grow up to be gigantic, they remain tractable and submissive because they don’t realize that they are actually far more powerful than the rope that tethers them. In other words, I don’t Sam to sense on any level that he is tethered. Hopefully, within the next few weeks we’ll be able to get rid of the oxygen leash, and by the time Sam figures out how to get mobile, he’ll be able to crawl as far away from the oxygen tank as he pleases.
In the meantime, here is a video Jason took two weeks ago of Sam trying to figure how to grab things. Enjoy!