Another morning mystery…

Rudy had a very peaceful night and we were hopeful that today would be a day of gaining strength for him, but unfortunately he’s run into difficulty breathing over the last couple of hours and the team is trying to figure things out. They ran a full battery of exams at about 7am which all came back clear (blood tests, chest Xray, etc) but they’ve just ordered a repeat of them all (it’s 11:45). They’ve backed the ventilator way up and are trying to figure out the low blood pressure. Another one of those mornings where there’s lots of activity in the room and several hushed conversations at bedside between doctors, nurses and respiratory techs. I hear the distinctive sound of the Xray machine rolling down the hallway toward our room right now, so we’ll have to clear out.

The kids are showing up in the next hour and I sure wish they would get to see Rudy at his best, but for some reason he’s having a battle during most of their visits. Right now, he clearly doesn’t like what their doing and is letting us know with one of his silent tantrums. He’s not making any noise, but as he’s lifting his heart rate above 200 bpm and dropping his O2 saturation below 50%, it’s by no means quiet in here–plenty of racket from all of the alarms.

We’ve had a lot of discharges on the unit. Hopefully it means a lot fewer kids had to spend Halloween here. For staffing purposes, they moved just about everyone they could to another wing so it’s a bit of a ghost town on our end with lots of empty rooms. The upside is I can go into the vacated rooms and exchange our chairs for better ones (kind of funny all the swapping that goes on here as patients leave).

The Xray just came back and it showed a significant accumulation of fluid, so they’re going to have to replace the chest tube. Up until now, they’ve watched it closely and been a bit surprised that the fluid hasn’t come back, but things have changed quickly since today’s early morning Xray. So, unfortunately the kids will have about 15 minutes to say hello and then we have to clear out for the procedure.

Waiting…waiting…waiting…

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.

Quick Update–another tube fell out

Just this evening as we were sitting here, nurse Cheryl discovered the drain tube on the other side fell out. My first response was to get disheartened as it could mean that tomorrow would be a repeat of today where we needed to knock Rudy out for another procedure so that they could re-install it, but the docs have some reason to believe that may not be the case.

When they originally put the drains in, Rudy was swollen up like the Michelin Man, but as fluid drained, the skin around them became looser to where they often lose hold and fall out. Right when it came out, Dr. Abel called for an Xray so he could look for an air pocket as this could lead to his lung collapsing. Fortunately, they didn’t any sign of this. As it was, the doctors were discussing whether to pull that drain today or tomorrow (to prevent infection I think), so please pray that no further fluid amasses and that the medicine they started tonight to stop the fluid from secreting would act quickly.

He’ll be off the ventilator by Kindergarten…

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!

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.

Praying for Katie

Today has been a quiet morning here with me and Rudy. He’s made continued steady progress, but yesterday’s talk of trying to take him off the ventilator today is not being discussed today. There is unanimity among the doctors that we want to get him off the respirator, but some differing viewpoints on the rate. As much as we want those tubes out of him so we can hold him and let him holler, it would be demoralizing to take them out too early and then have to re-intubate. This morning, he went on a good two-hour sprint and now they have dialed down the resting rate significantly so that he has to work a bit more—at first his O2 saturation wasn’t coming up high enough, but he seems to getting a good rhythm and isn’t setting off too many alarms. There are still some lingering signs of infection, so they are going to switch antibiotics and perhaps try to start a new catheter line today as the subclavian line might be a source. They have also backed down the Fentanyl he was receiving for pain and sedation so he’s a bit more active and not sure how much he likes that.

Since last night our friends, the Mannings, have been on our hearts as they are at a very difficult place with Katie’s HLHS treatment (click here). It serves to remind me of what a delicate process we’re on. It has often occurred to me in writing that I pray there will be a happy ending to our story, but that’s not guaranteed. Alan and Vickie have demonstrated to us that, in the midst of so many uncertainties, there are places for laughter, celebration and optimism just as there are places of concern, frustration and brutal realism. It’s hard to express the way this journey pitches one back between incredible highs and troublesome lows; often asking us to embrace both at the same time. Our prayers are with you, Alan and Vickie!

Move over, Kevin Bacon…

You might recall in my recent post on Dan Levi that I joked that I was waiting for the next “small world” connection we would make. Well, Dan forwarded my post to his dad, Ilan Levy, who sent me an e-mail pointing out the following:

In addition to the many connections you made with Dan (Stanford, NJ, Morristown, Santa Barbara, …Free food…) I may have another link to offer: Your last name GEYLING – triggered my memory of a FRANZ GEYLING from Bell Labs. This man, Franz Geyling, was a Department Head at the Whippany Labs and also a “specialist recruiter” for Bell Labs at Stanford. [“Specialist recruiting” meant the targeted recruitment of MS and Ph.D. candidates in specific specialties that Bell Labs needed.] He recruited me in 1969 to join Bell Labs in Whippany where I started a very satisfying 27-year-long career. I owe him a debt of gratitude for this pivotal “first real job” that lasted 27 years.

The connections just keep on coming. Yes, this is my dad, who also happened to recruit me for my first job. Isn’t it a long driveway, Ilan? How long did it take you to shovel the snow off it? Oh wait, as you used descriptors of “satisfying” and “gratitude” maybe he recruited you for a different job.

Over the past few months several friends have pointed out that, while this is a journey we never would have chose, there are unique discoveries and richness to be found. I am so thankful for everyone directly involved in Rudy’s care, but smile that it gives me another reason to be grateful for my dad. Thanks, Dad!

Sunday Afternoon with Dad

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.

Rudy the Weekend Warrior

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!