I sit back and try to imagine what it must be like to get Sam's updates in a blog. I have fallen into a routine of writing blog updates twice a day, both to keep you informed and to keep me somewhat sane. I'm a processor - I need to receive news, process it, and then figure out what I'm going to do with the information. This blog is allowing that to happen. For anyone reading it, though, I imagine it's like watching a movie where you fast forward very quickly, watch a scene, and then push pause...waiting for the next chance to fast forward.
Sadly, that's not the process for Elisa and me. The sheer pace of Sam's healing is painfully slow. We measure progress in 3-hour increments, which doesn't allow for a lot of progress. I know that the course of 10 days and a bunch of mini steps are amounting to great progress, but when you go and see him and the progress feels less than it should (or you can't even quantify what real progress should be), it is a disheartening drive home. The next three hours feel a little more dark, gray, lonely. And you gear yourself up for the next sign of progress, hoping it's a bit more than the last time. Hoping you could actually measure this progress on the great map Sam's following to come home to us.
On Monday, it seemed so clear. 5 little steps. And the last one was the physical act of bringing Sam home. That was Monday. 6 days have passed since then. And we're still only two milestones into the four. On the outside, you're probably scoffing. 2/5? You're more than 40% of the way there! Take away the last step, and you've crested the hill and are on the downward slope. The problem is that our point of view changes with each visit. While it might be a leap from one blog post to another that he's now marching towards the next milepost, for us, we see that he "only" dropped his oxygen by 2%. Or that it raised by 1%. Or that he's still not on the wall unit. Progress for us is simply a perception of how much farther we are now than we were 3 little hours ago.
Meanwhile, it feels like the tension builds at a much higher pace. Sometimes, I think I'm going crazy. I fail to see that we're making progress. I become frustrated that we haven't been given a specific date of release. Other days, I have more clarity. I see small steps as inches that will turn into feet...which will eventually turn into the last mile home. Today, it feels like inches are coming. But instead of 12 inches in a foot, there's 38. And don't get me started on how many feet are in that final mile.
That's not to say that there isn't progress. While things really calmed down overnight (the only marked change was that Sam's oxygen was kicked up by 1% to 28), the Respiratory Therapist made a new push for Sam's oxygen weaning. He's now down to 1 lpm (liter per minute). In an effort to help him tolerate the reduced pressure, they kicked his oxygen levels back up to 38%. But he's at the cusp of showing toleration that allows him to move from an oxygen machine to the oxygen on the wall. When we were talking to the nurse today, she stated that weaning on oxygen is almost the exact opposite experience of weaning Nitrous. Whereas you're dropping parts per minute of Nitrous at an alarming pace early on (Sam went from 20 to 5 in the manner of 12 hours), the hardest part is to wean off of the last 5 ppm. Our nurse said that once he tolerates 1 lpm, the movement down is much easier. It's an easier progression for Sam to go from 1.0 to .8, .6, etc. than it has been for him to go from 2 lpm to 1.
If the story ended there, I could measure the inches, know we were getting closer to another foot, and be okay. But that was our 8:00am feeding. At our 11:00am feeding, our only known progress was that we dropped from 38% to 36% oxygen. And now we're watching Sam's respiratory rate to make sure that it stays consistently below 60. Honestly, the worst thing you can do to us is give us a number that we're hoping for on a monitor. We don't see every time he's under that number. We see, count, and worry about every time/second/minute/etc. that Sam is above the desired number. The nurse wants to see Sam tolerate 1 lpm of oxygen for the next few hours before moving him to a wall unit. If that takes place, she doesn't expect any more movement today...unless he's making progress. Then we could hit .8 lpm. Maybe. Hopefully. But probably not. But we could.
As we seem to be adding the inches up to reach the oxygen wall unit, in the process I feel myself climbing up the proverbial wall with frustration and a general lack of patience. One day soon, we'll go in and be told that we're simply making sure he holds his stuff together before we can go home. Soon, we'll be bringing the car seat in and will realize that home life is about to get a bit more crazy. For now, I climb up the wall while Sam approaches it. And I hope that I can keep my sanity in check while we wait.
And wait.
And wait.
Brad
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