Author: Rolf

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!

Heart Drain in

Trish just got back to the room at 2:15. The heart drain was installed and fluid is draining, so now we have a third pair of generic fishing bears.  Rudy’s blood pressure and heart rate immediately changed for the better. Now we just need to pray it’s the right kind of fluid. If it’s “the wrong kind” it could mean another surgery. Waiting for word from the lab….

Another Procedure this Morning

It’s Friday AM and I’m in Santa Barbara.  It’s been great to see people and be in familiar surroundings though my mind and heart are understandably split between two places.  Trish just reported that things in LA are well but (I’ve found I always listen for that word when I check in with the doctors) the fluid around Rudy’s heart did increase overnight and there was a corresponding rise in his blood pressure.  So, the doctors have decided they need to drain it–while they could have taken him back to surgery, they have opted to do it at bedside via another chest tube.  From my distance it seems that there could be any number of reasons for this, not many of them super alarming at this point.  We’ll keep you posted.

Things at home are well.  The kids are certainly glad I’m home and, depending on how today goes, we may try to work this weekend so that they can stay in SB.  Having to go to LA every weekend to see us is wearing on them, so hopefully we’ll be able to spare them the round trip out .

Homage to a Hero: Dr. Dan Levi

Another one of the people who have been such an encouragement along the way.

 

Upon learning of Rudy’s diagnosis, the efforts I made to research HLHS treatment at UCLA led me to the Pediatric Cardiology website.  As I looked for points of contact, I came across Dan Levi’s webpage where two things caught my eye:  a title listing him as Director of the Pediatric Cardiology Fellowship and an undergraduate degree from Stanford.  I confess I’m not a very good alum and can’t remember a time I played the alma mater card (after all, it might not mean anything more than my dad and his writing a lot of checks to the same place 20 yrs ago), but it was worth a shot if it served to give me some leverage with someone in authority in the place my son needed treatment.  So I sent an e-mail explaining our diagnosis, asked what treatment might look like at UCLA and closing by pointing out our common Stanford tie but making it clear that this didn’t imply any inappropriate obligation.

 

The next day, just minutes after I got a “GO CARDINAL” e-mail telling me he would be calling shortly, Dan rang me on my cell phone.  Consistent with the conversation I had a day earlier with Gary Satou, I found comfort in speaking to someone knowledgeable in the scary mystery thrust on us.  Dan had good information, wise counsel and, more than anything, apparently as much time as I needed to ask questions and have information repeated.  He informed me of the steps UCLA had taken recently specifically in bringing on Brian Reemtsen to handle cases like ours.  He made it clear that I should contact him via phone or e-mail at any time if I had need.

 

Rudy’s early arrival prevented any chance of us having a chance to get acquainted ahead of time, but shortly after Rudy was placed in the CTICU, I met Dan in person.  I’m beginning to fear conversations with Dan as with each one we land on another common connection:  Stanford, people at Stanford, his parents live in SB, I’m acquainted with his aunt and uncle, we were born in the same town in NJ…I fear we’re not far from discovering that I bullied him at summer camp or egged his car in high school.

 

We’ve discovered so much about each other because Dan is personable and makes a point of stopping by and checking on us about as much as he checks on Rudy.  Right now, he’s not directly involved in Rudy’s care but, like most around here, seems to keep tabs on the Norwood patient.  There have been a few days where he’s come by and made mention that he wasn’t actually on floor duty.  Before we could compliment him on his dedication he explained, “I only come up here because the tea is free and buying it downstairs everyday would be really expensive.”  Given my reputation in every place I’ve worked of making excuses to drop by offices with free coffee and tasty snacks, I applaud Dan.

 

As Monday was a particularly rough day that left us unsettled, Trish and I were touched that he made a point of stopping in quickly just to offer some empathy stating “I don’t want to come by when things are only going well”.  In the years ahead, his specialty of heart catheterization will have him involved with some of Rudy’s key procedures down the line.  We’re grateful that coming back to UCLA for these will not only be a chance to receive excellent care, but a chance to see a friend.

 

A Wonderfully Boring Day

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!

All’s Calm on the Night Watch

After the day we had, I’ve come back to sit with Rudy for a few hours.  Just as we left this afternoon, they backed off most of the medications, so when I came in he had his eyes wide open and was looking around–I only wonder if he realizes what kind of day he had.  Within a minute of my coming up to him, all the alarms started to go off as his heart rate, blood pressure and breathing all went up.  Excited to see you too, champ!

In the hours since, he’s calmed down and now the numbers look beautiful.  About an hour ago, Dr. Lee came in and was considering some medication to lower the blood pressure, but before they could get it in the drip it dropped on it’s own.  I think he fell asleep.  So now, the room is tranquil and I think he might be lulled into deep sleep by the bubbling of the chest drains–that’s right, the polar (I mean “generic”) bears are back, but now he’s got a twin set and they rigged them with some kind of bubbling water effect so it sounds like a babbling brook in here.

In case your curiosity is piqued, here’s what generic bears look like:

 

 

Not sure what this is about?  Click here and then here for the background on this important issue.