It’s Sunday evening and the ups and downs this weekend leave us feeling sapped. Rudy was stable through most of last night until about 4am when he had another drop in blood pressure. This one was corrected with a change in medication. He was stable through the morning and then had a serious drop around 11am where the team had to jump in and do chest compressions for about 90 seconds until they got him stable. Fortunately, Drs. Reemsten, Kelly and Shannon were among those present (on Sunday morning—I don’t think they ever bring in a B-team here) and after wheeling in all the equipment for ultrasounds, Xrays and Echos it was determined that the primary cause was a clog in his ventilator that he wasn’t strong enough to clear. His major organs and especially the heart were looked at closely and determined sound. Later in the afternoon, they did an ultrasound on his brain just to make sure the episode didn’t cause any neurological damage. All was determined to be clear and the team continues to feel that these are part of the ups and downs that come with such a complex surgery on a delicate patient.
If this is part of the ups and downs, we’re not sure what it will feel like to experience some full blown complications. Dr. Reemtsen let us know from the outset that he would always be frank with us and tell us clearly if we ever get to a place where circumstances are dire, so there have been a couple of times in the last two days where I’ve reminded a doctor or two of this and been reassured that this is still a matter of time and these kind of setbacks are all things that need to be watched closely, but among the issues that arise with a patient like Rudy. As I write this, Rudy looks peaceful and angelic having had a bath at the end of all the episodes today. After being almost off all of medications on Wednesday, he’s now back on a whole slew of drips for blood pressure, infection, kidneys, blood product and a nice sedative so he can sleep. I’m thinking of asking the nurse to sneak Trish and I a couple doses of our own of the latter.
The two issues that seem to be of primary concern are infection and Necrotizing Enterocolitis (NEC). The latter is a common but potentially serious condition where the bowel doesn’t work (perhaps due to poor circulation) and it can develop into a rupture which would require surgery. As yet, they are taking Xrays every six hours and don’t see any ruptures. So now they address it by restricting food and giving antibiotics. They did discover some infection in cultures taken around his ventilator tube, which could also explain the accumulation of fluid around his lungs, lower blood pressure and general weakness. They started him on a course of antibiotics yesterday afternoon which will hopefully address both conditions.
In the midst of all this activity, the kids came to LA for a visit this weekend. Really great to see them, but I think I have a sense of what prison furlough must feel like. They really are troopers and we are so grateful for Oma and Opa taking care of them, but it’s clear the separation is taking a toll on them. We were able to squeeze in some time for fun on their terms (skatepark, movie, football, play) but it still included a goodbye that came too quickly for us all. We were hoping that I would be able to get back to SB sometime this week as even just a couple days up there could go a long way for them. I still would like to do it, but even a passing conversation with a doctor in the hallway this evening affirmed that we’ll need to stay close by Rudy for the next couple of days.
So please pray that Rudy’s blood pressure would stabilize and that antibiotics would do their work on the infection and the NEC. Pray that he would rest, gain strength and be able to move along in his recovery. Pray that we would be patient—at peace with the timeline for all of this and that we would have renewed confidence for a positive outcome for Rudy after the unsettling experiences of today. Pray that our kids would be at peace at their own level of understanding and emotions of this whole journey and that we would be wise as to what they need and be able to make decisions to leave Rudy if Wilson, Max and Olivia need us.