Today was a bit of a whirlwind as we once again woke up in Santa Barbara and are going to sleep in LA (or getting into bed and trying to).  It’s a day that leaves us really torn between the needs of Rudy and the needs of Wilson, Max and Olivia.  We envisioned getting up early, taking care of logistics around the house, packing up and getting in the car to LA around ten.  But between the list of chores being a bit too long and the kids deserving a bit more of our attention, we were finally rolling just after noon in two cars so that Oma and Opa could drive on home with the kids after a visit with Rudy.

We kept abreast of Rudy’s condition through calls to his nurse during each shift.  He has remained relatively stable since we left Yesterday.  I’ve noticed that no one uses generic terms to describe his status.  “He’s doing fine”, “He’s doing well.” or “He’s doing great.” are generalizations that just don’t work considering the larger realities.  So, instead we get the information we need in clinical language.  He is in a very delicate and critical place, so he’s not fine well or great.  But his body continues to waver within acceptable tolerances for the dozens of things the team is keeping an eye on.  I ask questions and have received patient explanations for the same things multiple times and am amazed at how many different ways the team employs to try to keep things in balance—oxygen, nitrogen, drugs with names I can’t pronounce, a transfusion, slowing down his breathing, speeding up his breathing, raising his blood pressure, lowering his blood pressure…  I liken it to a very delicately balanced scale where small weights are added and taken away from each side to try to maintain equilibrium—only the scale is on a table with a short leg so it takes constant adjustment to keep everything where it needs to be.

I didn’t believe Maria, our nurse, when she told us that Rudy had opened his eyes today as she was changing his diaper.  But she said they had scaled back the drug that was paralyzing him because…oh heck, I don’t know why—guess I’ll have to ask again.  I think they wanted him to be able to be a bit more responsive.  But she showed us how his foot would recoil just a bit when you tickle the bottom of it.  Today they have his right foot clear, so we’ve had fun holding on to that little ankle and rubbing those little toes.  Seems like a good match for the left, but we haven’t been able to see them next to each other yet.

The kids and Oma and Opa came in after Trish and I had a chance to check in.  This time, they knew the routine and lined up like junior surgeons at the sink to wash their hands before they went in.  Maria cautioned us that she didn’t want Rudy to get agitated as his signs were all stable, so the kids did their best to touch gently and speak softly.  Shortly into this, Rudy surprised us all by giving a quick shudder with his arms and legs—the most we’ve seen him move since he was hooked up to all these tubes.  So much for not agitating him, but Maria was cool with it.  Maybe Rudy just wanted to get up and play with his siblings.

Wilson took quite an interest and sat there watching Rudy and asking various questions about all the gauges and tubes.  I answered what I could and lied about the rest.  Olivia and Max wrote on the white board and also discovered that the windows looking into the unit can be used as dry erase boards too (but we wouldn’t let them—the stuff written there by the staff seems important).  After 30 minutes, Trish and the kids went out into a waiting room while I sat there with my parents for another 30 before we all headed for dinner, leaving Mom behind as she wanted to stay with Rudy.

The kids wanted to say goodbye to Rudy after dinner so we returned and were just about through the hand washing ritual when Trish waved me over to the bed.  As we all stood there, Rudy had his eyes open halfway for just a few seconds while tears welled up in ours. Just as quickly his were closed, but there was a big crocodile tear right below them.  The nurses tell us this happens.  Even though an infant may be paralyzed, they do sometimes shed tears, which can indicate they are in pain.  One of those heavy moments that drops on you in the middle of something like this.  I pray his eyes were just watering because I hate the thought of being so close and having to watch him cry.

More tears started flowing pretty soon as we started to go.  Wilson, having the most understanding of what’s going to happen tomorrow, understood the chance of how final this goodbye might be and quietly tried to hold it together as he walked away from the bed.  Pretty soon Max and Livy joined in, but we think their tears were more over the fact that we were having to say good bye for the week.  We hugged as long as we could at the car amidst pleas to not close the door, but finally we had to and stood there watching the van pull away.  Trish and I walked away torn and I thought how unfair my parting words of “be good at school this week” were.  I’m able to take tomorrow off because I’d be useless and without any ability focus, yet here I was telling them to stick with the routine despite all the thoughts and feelings going around in their hearts and heads.  Trish dropped notes to their teachers in all their bags so they’d be forewarned if anything seemed amiss.  We promised to call the school to get a message to them once Rudy was done as they wanted to know right away.  It’s our own little version of Sophie’s choice—I don’t want to leave Rudy, but it kills me to see my kids go through a week this loaded and not be with them.

Rudy’s first up for surgery in the morning.  They’ll come to get him about seven, so we’ll go at six to sit and pray with him.  Now it’s 11pm and we’re settled in our room, but I’m going to walk over to the hospital after posting this just to be him for a little bit.  I don’t need sleep right now—I’m just going to be sitting around tomorrow, but I do pray that Dr. Reemtsen and everyone in the operating room is getting plenty.  Lord, be with us all tomorrow.