It’s Tuesday at noon and we’re sitting with Rudy waiting for various test results to come back. The blood cultures take a bit of time so we don’t quite know what we’re dealing with yet in regards to infection, etc. but Rudy does seem to be more comfortable today which is always a relief. Last night was troubling for me on many levels but I was fixated on the fact that his eyes were open but they were unable to focus on or track any movement…they just slowly swirled around “looking for something” as he struggled with his breathing- probably due to various medications but it was hard to watch nonetheless. It was clear he was tired but he just couldn’t go to sleep. Funny, Mommy and Daddy had the same problem!
What’s amazing AND maddening is how quickly his condition can change. Earlier in the day yesterday, he was alert, bright-eyed and seemingly close to getting extubated.
By the evening, he was battling a fever, struggling for a breath and just not “with us”. I tossed and turned throughout the night wondering if we’re still within the expected range of “ups and downs” the doctors warned us about. After a talk with the doctor this morning, I think the answer is yes. Rudy tried a sprint this morning and lasted 30 minutes so they stopped the exercise and have decided to let him rest – no more sprints for today. But they have made some adjustments on his medications as this may have contributed to yesterday’s challenges.
My prayer this morning was that we’d have a day to simply love on Rudy with our presence and our kisses without the constant distraction of monitor alarms going off and procedures for which we need to leave the room and so far that’s the kind of day we’re having.
It is so clear that Rudy is well-loved by all the artwork that is lining the walls of his room from cousins, friends and siblings…especially Olivia. This week’s masterpiece from Livy says it all “Rudy is the wun i love”. How blessed this little man is! Rolf and I are doing our best to communicate everyone’s love and best wishes to him as we hover over him, talk, and stroke his head all the while trying not to stimulate him too much. We continue to walk along with Rudy this very fine balancing act. Thank you for supporting us in the walk.
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.
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!
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!
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!!!)
Well, our fascination with the generic bear chest drain is coming back to haunt us as Rudy now has THREE guarding the foot of his bed!!! The procedure they did earlier today to drain the fluid around his heart is called Pericardesis. The procedure was successful and quite a bit of fluid has drained already and his heart rate and blood pressure have stabilized. Nurse Faye sent the fluid to be tested right away but this particular test could take up to 24 hours so it is unlikely we’ll hear back today on the results. From what I understand, depending on what kind of fluid is draining from the sack around the heart, Rudy could be treated simply with medication and continued drainage from the generic bears for the next 24 hours or so…OR it could require another surgery (a.k.a. opening him up again) to ligate a duct in the chest where the leak is occurring. So, we must wait and see. Obviously, this delays moving forward on getting Rudy off the ventilator. They tried a sprint early this morning and he was back to tolerating it for only 30 minutes but Dr. Reemtsen wasn’t too concerned feeling like it was most likely because this darn fluid was putting pressure on the heart. I think he feels Rudy will get back on track once the fluid issue is resolved. Rudy looks alot stronger going into this weekend than he did when things started to go wacko last Friday so I’m hopeful we won’t have a repeat of last weekend’s episodes! We sure would appreciate your prayers for such. I’ll keep you posted…