The kids are in bed and I’m trying to take just a bit of time to gather my thoughts before sleep comes. Quite a day we’ve had.
When Trish got to UCLA just before 7pm, Rudy was clearly in a different state than when she left this morning. He was agitated, running a fever and Nurse Christine said he had a couple episodes where his heart rate was racing up over 200bpm–all giving more credence to the onset of an infection. After some work she was able to get him settled, off to sleep and even catch a few winks herself. They haven’t started any major lines yet, but may come in later tonight and get an arterial going.
I’m admittedly dazed in the wake of this turn of events. I don’t think I’m all that worried about Rudy right now. I don’t like the fact that he’s in distress and so uncomfortable, but as long as the docs continue to feel that he is stable from a cardiac perspective he does fight his way through these things. It just takes time. Time. Here we go again.
I’m once again struck by how little of this journey with HLHS takes place on our terms. Even if the intial diagnosis was a surprise, I think we somehow thought that from there we would be able to prepare and approach this thing methodically. I guess two weeks away from the hospital made me forget the reality that Rudy’s fight started earlier than we planned and lasted far beyond what we allotted. I guess I subconsciously assumed we were going to be able to schedule this thing a bit more from this point on, only to find ourselves thrust back into another episode yesterday afternoon. Storms never come on our terms–we just respond to them when they come.
Tonight I’m aware of the aches. I hate that my kids had to come home from school and be confronted with a new cycle of tag-team parenting just as things were getting routine again. Sweet, super kids–and maybe I’m just reading things into their behavior, but it sure felt like there was an emotional edge exposed tonight in our interactions. They deal with it the best they can. And now that they’re asleep the house feels really empty. I’m tired but also at a bit of a loss with what to do with myself–the daily schedule of meds, treatments and feedings isn’t there anymore. But beyond that, I just plain miss Rudy. I always wanted him to come home, but the two weeks he was here changed the intensity of this. Now, it’s not just that he isn’t here, it’s that he’s absent from where he belongs.