Going for the jugular…

It’s been awhile since we were the busy room in the unit. Unfortunately, that changed today. Rudy made it through the first of his three hour sprints in the early morning before I even got to his room. From 11 on, he started to get more and more fussy (with a high heart rate and breathing) and the usual steps to calm him down (holding him, changing positions, suction, rescue doses of sedatives) didn’t change things much over a four-hour span. While the team worked to eliminate possible causes, things became clear when his temperature spiked and his blood gases indicated he was headed toward acidosis. The infection we’ve been monitoring in the picc line was now presenting itself as something that needed to be reckoned with. Remarkable how quickly things can change—the same tests gave no indication of anything being amiss just hours earlier.

Just after 3pm I signed consent forms and left the room so the team could insert a new picc line. One of the reasons why the team didn’t just pull the line out of his arm right away was the simple fact that they are running out of sites to start lines on Rudy’s little body. This turned out to be all too true as they started trying to insert into Rudy’s groin. When that didn’t work, they tried to put a subclavian line in his chest. Two hours into my exile from the room, I was called asking to give consent for them to go through the neck into the jugular vein if chest insertion wasn’t possible.

So I set out on what turned out to be five hours of trying to keep myself busy. There’s a surreal feeling to the times where we have to leave Rudy for a procedure. If it doesn’t last longer than they say it’s going to it always feels that way. All I really wanted to do was curl up on a couch somewhere with a quart of Ben and Jerry’s, but I decided to take a walk around campus (OK, I did get an ice cream cone to safely offset any calories I might have burned). Turned out to be quite a long walk, but most of my exertion was directed toward not checking my phone every 30 seconds. About the time I thought it would be smart to get an early dinner while I couldn’t be in the room anyway, I got that call about consent to go for Rudy’s jugular. On hanging up, I found myself in another one of those surreal moments of uncomfortable weirdness—“Yes, go ahead and stick my son in the neck. Now, do I want Thai or a burrito?” Pretty good food, but not much enjoyment.

I walked back to the hospital a bit frustrated by how familiar this whole place and routine are. I know the stains on the sidewalk. I know it’s around shift change so I headed to the West elevator because the East gets crowded. I recognize too many of the faces coming in and out of the building. I saw a couple of nurses from labor and delivery and walked the other way as I just didn’t feel up to elaborating on why we’re still in the hospital 16 weeks after our encounter with them. I set up in one of the weird little lounges on the floor waiting for the call from the unit and pondered what decorator decided that pictures of polar bears would go well alongside the Great Wall of China mural (once again, at a moment when I’m not able to focus much on anything else—it’s polar bears again).

I got back to Rudy around 8:30pm and he was resting comfortably with the line in his neck and the suspect one gone from his arm. Dr. Robert still feels very good about where he is, but put a hold on extubating tomorrow. That really bums us out. We were so close—and still are, but wisdom would dictate that Rudy have at least a day of rest since this afternoon unfolded into more of an ordeal.

At long last it’s quiet here in Rudy’s room and I’ll just sit here with him for awhile as Nurse Betty keeps an eye on everything with her trademark quiet efficiency. Weary? You bet, but tomorrow’s another day and we’ll look to get back on track. Please pray with hope for Rudy—that he’d get good rest and be strong to move off the vent this week and that, now that the picc line has been changed, this bout with infection is safely behind us.

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.

All’s Calm on the Night Watch

As Trish posted earlier today, Rudy settled down nicely today and has spent most of the day sleeping peacefully. After the commotion yesterday with alarms going off every ten minutes for breathing, blood pressure, O2 and CO2 levels, today has been very calm and quiet. While he is being treated for infection, there are fewer indicators that this is a major issue. There are so many factors playing into his condition that isolating one cause is usually unrealistic, but one of the key items might have been decreasing a steroid medication too quickly. Now that it’s been restarted along with some other adjustments to his medication, he’s got all the numbers in the right ranges–in a deep sleep no less which means he doesn’t have to work at it.

Again, conversations with the doctors–Andy, Abel, Brian, and Ryan–have been very assuring and we were especlally encouraged by Gary Satou stopping by for a sit-down check in just to see how we were doing. One of our nurses from last week, Denise, stopped by for a comforting chat on her break and ended up cleaning Rudy’s mouth since she couldn’t stand all the gunk from the tape on his lips. He immediately gnawed on the sponge she was using so I think he’s hankering for some chow–enough with these intravenous feeds. Right now peaceful sleep is a good thing (and we hope to get some of our own tonight) as it’s helping him summon strength. There are some decisions to be made about how to proceed with the ventilator, but we’ll see what tomorrow brings.

At Least Two Steps Back…

It’s Monday just after 9pm and we’re trying to come to terms with a couple setbacks. While the day started out with the potentiality of Rudy coming off the ventilator by this evening we’re back to an indefinite timeline. Early on, the team decided not to rush things and wanted to see what another day of sprints would do. Rudy made it through the first one fine, but didn’t seem to recover well. Only 30 minutes into his second sprint, his O2 saturation was dropping too low and CO2 was getting higher. These remained out of bounds after they put him back on the ventilator and his blood pressure was consistently low and different measures weren’t taking much effect. We’re coming to learn that the number of people in the room and the frequency with which they come and go is an indicator that they are watching something closely. One has to fight the temptation to bombard them with too many questions as they work to get an understanding of what’s going on.

Just before dinner, Dr. Abel told us that they suspect they are dealing with another infection. Their worst fear is that it’s in the blood which would mean a 3 week course of antibiotics and certainly more delay in the weaning off the ventilator. We spent some time wondering if this was “two steps up and three back” or “three up and two back” but either way it’s a setback and that just plain sucks (sorry, short on eloquence at the moment). Physically, Rudy looks much better than he did during last Monday’s episode. He’s been wide away all day, which could be because he’s working so hard to get oxygen. Thankfully, he hasn’t been having any of the silent tantrums–I can only stand so many of those. But his eyes jump about quite a bit which can be read as panic, but that might just be our frame of mind at the moment.

So tonight we pray for peace. For Rudy, that he would be calm and be able to sleep a deep unpanicked sleep; that he would be protected from infection and that all the numbers on the gauges would stay where they should be. For us, we ask for that same peace as we deal with so many things we can’t control–from Rudy’s condition to the indefinite timeframe this journey has for our family.

Not Quite the Calm Day we Prayed For

Rudy’s been on quite a ride today. The weekend had activity enough, so as we walked into the hospital this morning, Trish offered up a quick prayer for a calm day with no surprises. But that wasn’t to be. It’s now just about six and we’ve sat here at Rudy’s bedside for the longest stretch so far today—about 40 minutes. Rudy underwent three procedures today that had us out of the room for as much as 2hrs each time.

When we came in this morning, he looked plump as a turkey due to infection and the fluids he was retaining. The skin on his torso was stretched taught and shiny from all the stuff in there. Through the night, the doctors were very concerned with keeping his blood pressure high. When we left last night the alarm for low blood pressure seemed to be going off every three minutes and that pattern continued. By this morning, they put him on another dose of paralytics and sedatives so that the team could regulate his blood pressure and ventilation without any movements of his interfering. While this was still categorized as part of the “ups and downs” it was an emotional step backwards to see him immobilized like he was around the surgery.

They decided to insert two chest tubes to drain the fluid off his lungs. The fluid coming from the left side bore evidence of infection, which confirmed the course the team had started with antibiotics a couple days ago. Fortunately, it was determined that the fluid was just “milky” and not “puss-y” (finally some medical terms we understand)—the latter would have been signs of a more advanced infection that would have set things back further. Almost immediately after the drains were placed, his body looked remarkably deflated and both his blood pressure and breathing began to improve. Relieving all that pressure made it easier for his blood to pump and his lungs to work. As we walked back into his room, we were asked to give consent for the insertion of a new IV catheter line into his chest which meant we had to leave again. Unfortunately the nurse was not able to place the line through his little arm veins (something they warned us might happen) after multiple tries, so after a brief return to his bedside it was decided that Dr. Kelly would put in a chest port, so even though we were running out of lobbies to sit in, we stumbled out for another hour or so. This procedure went well and an X-ray confirmed that the line was in the right place so now Dr. Abel and Nurse Katrina are making final adjustments next to me as it’s getting dark outside.

The vital signs and labs are looking good. They’ve backed Rudy off most of the medications and he’s starting to wake up. A few minutes ago, the alarm went off for high blood pressure which is something we haven’t heard in awhile. The ventilator has been turned down to 30 breaths per minute after being above 40 the last few days. The team feels good about how he looks, but we can’t help feeling he looks a bit pale and wiped out considering the day he’s had. Here’s praying for a night of rest and that calm day to be tomorrow.