Sunday with Livy and Rudy.

After our two days at home, Livy and I came down together to spend the day with Rudy. She still gets distracted by her new haircut every so often and tosses her head or stares at her reflection a bit. More than once she’s come up to ask, “Daddy, does my hair look cute?” with all the rhetorical uncertainty of one asking if there’s going to be gravity tomorrow. She’s endeared herself to the nurses and that’s resulted in various new experiences: helping Nurse Denise with labels, Uno with Nurse Katrina and making marshmallow dradles and playing dradle with Nurse Aliza. Turns out she’s a shark and won all the chocolate.

In the middle of it all, Rudy is continuing according to his own timeline. A highlight today is how alert he’s been. He’s been awake for long stretches and looking calmly around the room at us with his big eyes. The team has been hopeful that he would be able to regulate his own blood pressure without medication and he’s done fairly well with that. It varies significantly when he’s awake vs. asleep, but it hasn’t been high enough for any period of time that has led them to medicate.

The primary concern is the fluid on Rudy’s left lung. The right side has responded very well to pleurodesis and, as Dr. Brian prepared us for the likelihood that he might have to do the left, it’s looking more and more that way. The fluid output from the left side increases significantly when he’s being fed–since they cut off the feeds yesterday, it’s subsided to a very small amount. There’s some possibility that, once it all drains, that the tissue on the left side could all pull together and put an end to this, but Rudy’s history wouldn’t make us all too confident in that. Please pray specifically for resolution on this issue this week–either that it would go away completely on it’s own or that Brian would be able to address it completely with pleurodesis on Friday.

As I’ve said before, this whole situation is puzzling to the team and it causes them to wonder if Rudy might have some kind of anomaly in his lymphatic system. This would not be entirely uncommon, considering the anomaly with his heart nearby that brought us here. Should pleurodesis not address the fluid situation or if it ends up simply diverting it to someplace else in the body, there would not be many options to deal with this. What is troubling is that, apart from this, Rudy is so strong on all other fronts. His heart repair is very strong, his hematology is right where it needs to be and his kidneys have shown they can bounce back. The remaining hurdles of his breathing and his feeding might take time ,but that is something the team knows how to work on. What’s happening with Rudy’s lymphatic system is very uncommon, among our team and the many colleagues they have consulted with around the country, but we need to get past it so please pray that we would be able to get past this this week.

Tomorrow we’re looking forward to being back in Santa Barbara to celebrate Grandpa Dick’s birthday together and then Trish will assume duty back here on Tuesday. We pray that your are all savoring your holidays celebrations and vacations.

The Plan for today–Surgery

Last night I asked that there would be clarity this morning surrounding the course of action we need to take. We have that, because the 3AM chest Xray showed an a great deal of fluid on Rudy’s right side, so all parties agree that we’ve given more than enough time for the chylothorax to clear with medication and it’s time to fix the problem surgically. I wish we would have been able to get past this without having to do another operation, but compared to the one he already had, this is very minor. They’ll come in through his side and then tie off the thoracic duct so no more lymphatic fluid will come into the chest cavity.

Rudy is an “add-on” case on the OR schedule so it’s not certain when we’ll get called into surgery. They’ll make sure it happens today, but it will be in between or after the major cases. So, probably not before noon, but some time before 6pm. Stay tuned and I’ll keep you posted when I know anything.

On other happenings around the unit. We were excited for Rick and Nicole as Cody got to go home (but my enthusiasm comes nowhere near Cody’s whose been here for about a month for brain surgery). I feel genuinely happy for families as they get discharged, though I always sense an awkwardness from the parents–almost a guilt that they’re abandoning us. I’m certain I’ll feel the same when it’s our time and will struggle to contain my celebration until we’re far away from here. But regardless of our own difficulties, it’s no fun to watch someone else have to go through it and it sure makes me grateful when people can put this place behind them. I hope there was lots of happy noise at Cody’s house last night–and that it won’t stop for some time!

Logan moved across the unit over to Cody’s old room on the PICU side late yesterday afternoon. Pretty nice digs–a built-in couch, cabinets and a private bath, but more importantly it means that he doesn’t need the high-tech CTICU gear anymore. Be encouraged, Brett and Raime, you’re one step closer!

Pray for the fluid to stop…

The odd existence we’re living here make times of focused or extended prayer a challenge. Today, like many days, we uttered a quick “Please, Jesus, let this be a calm day” as we stepped off the elevator on the 5th floor. Unfortunately we were met with a bump shortly after we got here as we were having a check in with Dr. Reemtsen. Alarms started to go off and, after a couple nonchalant looks at the screen (the usual first response), the tone got more concerned and then the inexplicable signal went off and six people were suddenly at the bedside dealing with the breathing tube. Just a few minutes passed and, almost as quickly as they came in, everyone was gone. No big deal–possibly just an obstruction in the breathing tube. I’m glad there’s always a couple that check on us before going and we usually lie and go along with the “no big deal” line, but I don’t think we fool them with our ashen complexions and tears welling up. I don’t think Rudy was ever in significant danger, but I don’t think we’ll ever get used to jolts like this. Suddenly we’re both in need of comfort foods and are craving Big Macs and lots of french fries (you go to your happy place, we’ll go to ours).

The conversation with Dr. Reemtsen did set forth a plan for the week. Rudy’s cardiac function continues to be very strong, so much that Dr. Harrison recommended that his next echocardiogram be at his discharge. Everything they are addressing now has little to do with heart function, the biggest issue being the chylothorax (lymphatic fluid in the chest cavity). The hope has been that the drainage into the chest drain would taper off, but that hasn’t been the case. The medicine they’ve been giving him (Octreotide) should have worked by now, but they’re going to give it a few more days. If there’s no change, the plan is to do another surgery on Thursday to ligate the thoracic duct. Not a major surgery, but surely one we’d rather not see Rudy have to endure, so please pray that this would heal itself and the flow of fluid to the drains would stop. So far we’ve seen fluids be very responsive to prayer so let’s channel the same effort that went into producing urine into the ceasing of lymphatic fluid.

Dr. Reemtsen feels that Rudy won’t make much progress until this can be corrected as all of his nutrition is likely just flowing out of his body into the drains. They are also looking closely at his endocrine system as they are wondering if there’s some steriod deficiency or ongoing thyroid issues that are hindering his ability to move forward. There’s also been consultation with the infectious diseases team as, though no significant cultures have grown, some of his symptoms (low blood pressure, occasional fevers) are making it tough to rule out). In any case of extended hospitalization, the threat of infection emerges, so we’re praying against this.

That’s this morning’s update. In the midst of it all, Rudy is lying very calmly and loves looking up at his aquarium. I do wonder often what kind of thoughts are going on in his little mind through all of this.