Trish and I have both been in Santa Barbara today to be with Grandma and Grandpa and get the kids back off to school. Had lunch out on the pier and enjoyed that “only in Santa Barbara” view. We’ve been checking in down at UCLA by phone and are very encouraged by Rudy’s steady progress. Two more steps down on his ventilator rate mean he just came down to 10 breaths per minute this evening and seems to be tolerating things well. The team will likely continue to step down the rate, but will also start to turn down the pressure with which each breath comes from the ventilator. In my check-in with Dr. Lee this evening, he mentioned that Rudy’s prealbumin, which is an indicator of nutrition, is now at 29! The last time they tried to extubate him, it was less than 10. With good nourishment, they hoped to maintain a level of 20 so it’s great to have Rudy well above that. The prayers for nutrition are clearly being answered and he now has lots of energy for breathing. Go, Rudy, Go!!
Trish will be heading back to UCLA tomorrow and we’re excited that one of us can be with Rudy during this encouraging swing. While the team is keeping an eye on some very small fluid pockets on his lungs, these haven’t grown significantly over the last week so we can continue to hold him–and something tells me that’s what Trish will be doing most of the next few days.
In addition to your prayers, we also have a minor logistical request for those who are so inclined. A few people who called Trish today might have wondered if it sounded like she was whitewater rafting. Actually, in a fit of efficiency this weekend, Trish laundered her cell phone–she might just be taking the whole hygiene around Rudy thing a bit too far. It’s now downy fresh and static-free but doesn’t actually send and receive calls. We did set her up with a new one (Dante overlooked a 10th circle of Hell–the cell phone store). Unfortunately her contacts didn’t transfer so if you speak with Trish regularly by cell phone, she would appreciate you calling hers sometime in the next few days so she can capture your number–or send it to her by e-mail. Pat me on the back for restraining myself…there are just too many jokes to make here.
Trish went back to SB for the weekend, so I’m here hanging with Rudy. The 4pm Doctor Parade just came by (OK, they call them “rounds” but it always feels like the former as I step out on our front “porch” and wave as they go by).
After looking at the flourscope study, Dr. Reemtsen feels there is no damage to the diaphragm, making the key concern nutrition and conditioning. Nutritional status can be determined by checking prealbumin levels. Rudy’s level is 9; it should be 20. This confirms the plan of action determined with his chylothorax. If we can stop the leak, Rudy can retain the protein and nutrients he needs to breathe on his own.
The only way we will avoid surgery on Monday is if the chest tube output stops completely. It just dawned on me that Rudy might be a bit of a troublemaker. They put Rudy on Monday’s surgery calendar three hours ago and since then, wouldn’t you know, the chest drain output has gone down to pretty close to nothing. Reemtsen is a cool customer, but he wonders if Rudy is trying to drive him crazy.
Turnabout is fair play, so Brian got the last word by sending Rudy on a two hour sprint. Just because the timeline got extended a bit they aren’t giving Rudy the weekend off. He’ll be doing three a day as he seems to tolerate these well and every little bit of conditioning helps.
So, I’m looking forward to a weekend watching the tube!
We did “the walk” again this morning as Rudy had to go down to the Cath Lab for a fluoroscopy. Rudy looked like a child emperor in his carriage as a half dozen people wheeled him and all his gear down to the elevator in his big crib. Trish and I made like we were helpful, moving chairs or pushing a door button here ore there, but it was hard to divert our attention from the respiratory therapist’s hand regularly squeezing the inflator that they use to help him breathe when he’s off the machine. Hard to believe it’s been almost six weeks since the last time he was out of this room.
The Cathertization Lab is a high-tech room filled with gear one can’t even imagine. We watched from the control room as they put him on a table with a huge bank of eight flat-panel displays behind it. When things were ready, Dr. Dan, Dr. Lee and the RT put on full body wraps of lead armor to protect themselves from whatever invisible thing this machine does. Lying there on the table, Rudy’s defense was limited to little more than a clean diaper.
All of this was to give the team a very clear image of what’s happening with Rudy’s chest when he tries to breathe—a “video Xray” of sorts. For all the time it took to transport Rudy and get him positioned, it’s startling that they needed to look for only 15 seconds at what was going on to make their assessment. There is no sign of paralysis, detachment or extensive nerve damage affecting the muscles of his left diaphragm. It just isn’t moving with the vigor it should.
The good news is that this is not something that requires a surgical fix. The bad news is that the main remedy for this is time; time for Rudy’s nutrition to take effect and for the muscles to get strong. Perhaps there is some minor nerve damage, but attention is focusing back on his chylothorax issue. The fluid leaking from his chest is draining the protein he needs to get strong. Without fixing this, we can’t begin feeding him into his stomach which would really further nutrition. So, though we haven’t heard definitively yet from Dr. Reemtsen, word is that Rudy will be placed on the surgery schedule for Monday and will only be removed if there is zero output from the chest tubes. We appreciate having a team that isn’t too quick to operate, but there also comes a point where waiting things out has run its course.
That’s the update for now. Still praying for peace and protection to all of you back home in Santa Barbara.
Rudy had a strong day today. His numbers held well and we heard few alarms. One therapy that seems to be working well is the prescription of T3 for his thyroid deficiency. You might recall that his thyroid function shut down a few weeks back, which would impact his overall vitality. Having tried some other approaches yesterday they started T3 dosages which, along with the other medications, seem to be slowing the chest drainage. Yesterday we had 120cc over 12 hours. Today we have 90cc during the same period. When I left on Monday it was somethingin the range of 240cc, so we have made clear progress. Dr. Reemtsen has Rudy in the surgery queue for Monday, but we are praying the trend will continue so that we can cancel this one as well.
In the meantime, we have made progress on sprints off the ventilator. Yesterday and today, he cruised through two one-hour sprints each day, so thanks for your prayers and please pray that this trend will continue. Nurses Filma and Denise got a bit carried away doting on Rudy today and ended up putting him in a “snuggle-up” and propping him way up so he could look around. At first he seemed a bit dizzy, but it grew on him. Now he looks regal; propped up a bit in a bit of a throne.
It’s 7:15 and Trish and I are going to drive up to SB tonight (yes, I wasn’t joking–our anniversary reservation is at Chick-Fil-A in Oxnard). It will be fun to all be at home for the first time in a month. We’re looking forward to a quick visit tomorrow from Trish’s mom. In light of Grandpa’s radiation starting this week, we’re glad Grandma Jo can steal away for a couple of days to meet Rudy.
Having learned the lesson Charlie Brown never could (that Lucy was never going to let him kick the football), we try not to get our hopes up every morning that this will be the one where the breathing tube is pulled. Probably wise, because this morning they decided to sedate Rudy so they could re-install the drain line that came out last night. Unfortunately they weren’t able to get it in, so they’ll probably have another go at it this afternoon. So it’ll be another day of seeing if Rudy can hold the line. His numbers have been good and they didn’t need to scale back the ventilator this time and it’s holding at 16 bpm. While it’s a bit disappointing to have the progress slowed for another day, it’s certainly better than holding off only to have him go into distress over the weekend and lose several.
I heard from a few subscribers today about no update going out last night. Sorry about that–we didn’t get the post up before the automated send deadline. Thanks for your dedicated reading. I noticed today on our stats site that Rudy’s Beat crossed over 25,000 hits today. Wow, that’s amazing! The support and interest in our little warrior is overwhelming.
We had decided not to mention the possibility of extubating Rudy this morning as I’m not sure how many nights we’ve left with that being the plan only to have a change in course overnight. Unfortunately, that was the case again. Rudy had a great day yesterday–alert with consistent numbers where they all should be–so they were going to steadily dial down the vent overnight to see if they could get to 8 bpm by 6am. A routine chest Xray at 4am (if there is anything routine about an Xray at 4am) showed a plural effusion on his right side–fluid on his lungs. The drain on that side had fallen out yesterday and the team decided not to replace it, but took the course of monitoring things closely.
The good news is that the accumlating fluid was detected quickly before other signs of distress kicked in. The ventilator was bumped back up and he underwent a procedure this morning to install a new drain (more generic bears again). All of the numbers have held fairly well during the day, so the main issues we had to overcome were the sedation that knocked him out most of the day and the always closely-monitored flow of urine. We’re still waiting for the latter to come back where it needs to be to let us know his kidneys are OK, but we’re glad that Rudy woke up and joined us again about an hour ago–the good kind of awake, where he can focus and looks at me with quiet, patient but questioning eyes. We can drive ourselves crazy if we focus too much on getting that horrible tube out of his mouth. Tomorrow!? Tomorrow!? Tomorrow!? Dr. Harrison came on today and like everyone else, he’s optimistic but wisely non-committal as to a timeline. I was able to extract a promise from him that it’ll certainly be out by Rudy’s first day of kindergarten.
We’ve noticed a respectful debate emerging between the Cardiology and the ICU docs regarding Rudy and the ventilator. The former would want a quicker wean while the latter argue for a more gradual process (Note–if Reemtsen ever teaches swimming lessons, verify that his pool has a shallow end before you sign up your kids). I am grateful that multiple minds, each holding their own perspectives, are involved in this key discussion.
UPDATE–THIS JUST IN!!! As I’ve been typing Dr. Mary (pronounced as the French–“Marie”) came in and discovered 10ml in the pee tube. Yahoo! She also reported that Dr. Harrison feels that Rudy is far enough out of the woods on any intestinal issues that they can start some powerful medication for his chylothorax (the liquid that keeps collecting on his chest). This will hopefully stop the fluid from collecting over the next few days so we can get rid of the drains and reduce the risk of infection from them.
We said goodbye to Robin and “Papa”, her baby boy, today. They arrived just a few days after us from Lompoc and were part of our temporary community that formed here over the last month in the ICU. We feel a bit like year-round residents in a resort community of some kind. The neighbors come and go every few days, but we’re still here. We wave to them from the front porch as they drive away. Blessings, peace and health to you, Robin and Papa!
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.
Well, Rudy and I have been living the good life today as Trish is running Livy home and stopping in for a night with the kids. I’m here in a cozy recliner and we’ve been watching a happy afternoon of football, capped by the Giants pulling it out over the Steelers. Deep down, I think Rudy is as elated as I am but he has rather understated ways of expressing it in his sleep. He’s on two-hour sprints today, but we stopped the morning one at 1:20 as his heart rate went up too high. They’re not sure why, but he was awake for quite awhile and then I came in and visited with the doctors for awhile so the commotion might have piqued his curiosity and kicked up his heart. He’s now on his second one—fast asleep and we’re keeping the room quiet. Things are looking good. Sprint well, Rudy! I’ll be here in the recliner. Doing nothing. Lazy Daddy. Who’s the one who really needs the exercise? If Rudy continues to do well on these two sprints, they may take him off the respirator tomorrow, so please pray to that end. That would be such a fun milestone to hit.
Trish and I enjoyed having Livy here on her own. She’s a compassionate big sister and loved going through the hand washing regimen, coming up to Rudy’s bed and then quietly whispering to him. The doctors and nurses all liked her and she got set up with colored pencils and paper and began churning out masterpieces by the gross—hearts, flowers, puppy dogs and all kinds of things. People like her drawings and they like doing special things for us—about every third person offered her a popsicle and every now again she would sheepishly go down the hall with them to return with green lips and a big smile.
As I was putting her to bed last night, I asked her what her favorite part of the day was and she quickly said, “Going to the ice cream room!” She went on to describe the vast array of popsicles and ice cream choices there were to pick from and said she couldn’t wait to go back. I lovingly tucked her in, patted her head and turned to rant in the bathroom. They’ve got an ICE CREAM ROOM here?!!! So I’ve been tying myself over on free crackers from the cafeteria and ice chips for the last three weeks, but the little girl in pink is on the floor for less than an hour and gets to go to the ice cream room!! I wonder if it’s got a whipped cream ceiling and waffle-cone furniture. I must find this room—or just keep sending Livy to different nurses until I get my fill. Stay tuned.
We were relieved to hear back from the lab today that the fluid around the heart was not the bad kind so there’s no need for a surgery to correct this. Hopefully just a bit more time on the drain will do the trick. This is a drain they don’t want to keep in too long so we’re praying it will do it’s work. I believe we wrote last week about the interruption in Rudy’s thyroid function. Dr. Reemtsen feels like these kinds of things could be a result of that as the body and its systems just aren’t as vigorous.
In case you’re concerned, Rudy has not been a couch potato this weekend. He’s out there getting lots of exercise. Today, it’s been three 90-minute sprints off the ventilator and he’s done beautifully–in fact, he was asleep for two of them (show off!). Tomorrow they’re going to go for two hours at a time. Go, Rudy, Go!
After being away from him for a few days, I’ve noticed a few changes. His face does look fuller and when he’s awake, he’s very, very alert. Please pray this trend would continue. While anything can change, at this rate we might be looking at extubating him from the ventilator on Monday or Tuesday.
I had a good few days in Santa Barbara, being with the kids and seeing those I could around the mission. I got to see Max score a touchdown at his flag football game, listen to Wilson drum, and take Livy back and forth to school. Yesterday we went out for a bike ride on Ellwood Mesa at sunset and it was INCREDIBLE. One of those clear evenings where you can see out to the islands over a still ocean. I think I’d enjoy it on just about any day, but given the hospital cocoon we’ve been living in for the last three weeks, it struck me as even more beautiful. Today, Livy and I made the drive down to LA as the boys were looking forward to playing at friends houses and were glad not to have to make the round trip. Trish will probably take Livy back tomorrow and spend a day or two at home herself (kids–if you’re reading this–clean your rooms!!!)
Hope you’re having a good weekend!
Our prayer for a calm day was answered today. Rudy was calm all day, blood pressure stayed right where it was supposed to without any meds and fluid continued to drain. The team has been progressively turning down the ventilator every four hours and overall he’s handling that well. There have been about three episodes where his breathing gets rapid and shallow–usually when we’re talking or up close to the bed. But while he wasn’t able to recover from these over the weekend, today he was able to slow his breathing down. As I write this, he’s on the high side (75 bpm), so I’m quietly praying that number down. The alarm goes off around 80, we’d love to see it in the 30s. Ahhh, just crossed down into the high 60s. Now my own breathing is slowing…
Assuming his progress continues, we are probably looking at another week on the ventilator. If all remains calm tonight, I’ll come to the hospital to wish Rudy a happy three-week birthday and will then make the run up to Santa Barbara for a couple days. The kids have been such troopers (not to mention Oma and Opa), so it will be good to have time with them at home, walk them to school and cheer on Max at his flag football game. It will be good to sleep in my own bed and see a few familiar faces in the office and around town.
The breaths per minute have fallen down to 57 right now…sweet!