Slowing the Pace

Rudy had some challenges yesterday afternoon. He began to struggle with his breathing more than the doctors wanted as the ventilator was progressively being turned down over a series of hours. His blood oxygen saturation was consistently low and his digestion slowed significantly (an early sign of distress). The doctors also discovered a thyroid deficiency and were also concerned about the level of fluid in his lungs (too much, so by late afternoon they decided that he needs to rest and gain strength for awhile. They took him off breast milk and turned the ventilator back up to where it’s doing all his breathing for him and gave him time to rest. So, he’s been on this course through last night and most of today.

The doctors have told us that they will always communicate clearly, especially if there are major complications, so we are trying to hear them very clearly that this is a setback, but not outside the scope of what they would expect in the treatment process. It is a bit of a discouragement to have to re-adjust our timeline and realize we may be looking at a matter of a week or more rather than a few days to get him off the respirator. So please pray for him to continue gathering strength and to give him comfort in this process–he’s continually more expressive and the soundless crying fits can be tough to watch. There are increased risks of pneumonia for patients who are on ventilators too long, so please pray for protection from that and that the thyroid production would kick back in. On a positive note, his kidneys continue to make good progress with the creatinine falling to 1.1 this morning. This afternoon, they will do an Xray on his stomach to make sure that there’s nothing physiological interfering with his digestion.

I went to see Rudy at 6am this morning and since then we’ve been away from the hospital with the rest of our kids. Please pray for them during this time. Trish and I are trying to be wise in the way be balance life during this separation. The longer it extends, the more we will need to look at taking some trips home so that we aren’t just trying to cram time in with them on the weekends. They are always eager to see us, but having to make the trip to LA too many weekends in a row could get old.

The Definitive Word on the Polar Bears

Given the attentiveness of the UCLA team to all of our questions and concerns, it shouldn’t surprise me that nurse Joyce took action upon reading my ruminations on the polar bears. The following e-mail from our friends at the Atrium Corporation can stand as the definitive verdict on said bears:

Thanks for your email and hopefully you can forward this to the parent and families who asked the question. The bears in question are generic (not necessarily polar bears, just white because of color constraints in manufacturing). They hail from some original bears from a long time ago (approximately 20 years) that were cute, cuddly, fuzzy and white used in one of our nursing trade shows and drawn as give-a-ways or door prizes. They were also part of a campaign of “give a patient and/or nurse a hug” with a picture of the same bears on buttons. So, you see, bears have been around for a long time on our products and promotion and education materials. We did have pencils and alphabet blocks for a period of time on the pediatric drains instead of bears.

We’ve never considered bunny rabbits or balloons, but the point was to make the complex technology that is part of this “simple chest drain” less “scary” not only for the kids as patients but also for their parents as they see their children vulnerable and sick in the hospital setting. We have had people debate whether the graphics have a place in the highly technical world of medicine and the importance of the chest drain and its function. In essence, such non treatment or care “marketing images” don’t belong. We strongly disagree and have demonstrated our commitment and devoted 25 years to this life saving device and pulmonary science keeping it the highest quality at best price. When was the last time you had a performance or functional issue with an Atrium Chest Drain?

Equally important from that marketing point of view- is that the decision makers, buyers and procurement system of the hospital could care less about our bear graphics in influencing their technical and cost decision. So the end receiver of the technology- the patient may or may not appreciate the graphics design but they were not involved in the decision to use or buy the device. In almost 25 years, I can count on one hand the number of people who have expressed any negative feedback on the graphics; on the positive feedback side we’ve had overwhelming response of the human connection and comfort the bears bring to the family and nurses using or viewing the chest drain.

Most importantly, it’s not what’s on the outside that matters, it’s what goes inside and how that simple plastic box from Atrium Medical does its job day in and day out, without compromise, without problems, 60 parts that work flawlessly over a Million times each year for you and your patients. That’s not marketing or sales, that’s engineering and quality. When you combine that with the window dressing it’s a pretty impressive package, don’t you think?

Thanks again for your question, keep doing what you do for your patients, we all know it’s not getting any easier and thanks for letting us play a role in their recovery and health. We love it!

Ted Karwoski

COO

Senior Vice President of Research and Operations

Atrium Medical Corporation

5 Wentworth Drive

Hudson, New Hampshire 03051

I’ve thanked Mr. Karwoski for his input and stand firm in my opinion that Atrium is by far my preferred brand of chest pump. However, it does seem a bit denigrating to reduce these remarkable creatures to “generic bears”—they’ve taught themselves to fish with poles—at least dignify them with a species! That said, I’m glad the company focuses more on the internal workings of their product than the graphics outside, though if they ever reconsider it, I’ve come to think that an elephant or perhaps an octopus would be a more friendly representation for this suction-based device. If they’re receptive to my free input, I’ve also been kicking around ideas for a slogan (“Baby, do we ever suck!”), but perhaps it’s best to stick to my current line of work. All fun aside, thanks Atrium for a great product that allowed Rudy’s chest to drain so quickly that it could be closed up ahead of schedule and the threat of infection greatly minimized. I have to imagine there are countless little gizmos attached to Rudy right now quietly doing what very intelligent people have designed them to do so that he can live. So many people to be thankful for.

The words of Jimmy Buffet ring true: “If we couldn’t laugh, we would all go insane.” In the midst of the seriousness of Rudy’s situation, we are grateful for things that lighten the burden. This morning, we received encouragement that the creatinine count dropped from 2.4 to 2.2, so his kidney function seems to have reversed its trend. Nurse Christine washed him all up and after moving the blood pressure cuff to his leg was able to put him in a shirt for the first time after routing all of the lines and tubes appropriately. He’s more and more expressive each day but it’s bittersweet to watch his face scrunch up and his legs kick in a crying fit but have him unable to make a sound. I can’t imagine we’ll complain about any noise he makes once they take the chest tube out.

Measurement by Little Numbers

More than a few visitors have been given a start as they come into Rudy’s room and see his small six-pound form surrounded by a wall of gauges and machines that resemble a smaller version of Mission Control. This weekend I was struck by the miniscule things we’re watching for. As we’ve been praying for his body to drain fluid, every one was encouraged by yesterday’s negative balance of 30cc over 24 hours. I got to thinking about it and did some conversion when I realized that this converts to about two tablespoons, but its progress. Knowing this, we got encouraging news this morning when we discovered that the negative balance was 130cc this morning (8.79 tablespoons). Four Nephrologists (kidney specialists) have been by in the last two days as the team wants to keep a close eye on what’s happening there. Rudy’s creatinine levels are about 5 times what they should be (2.4 vs. 0.6) but fortunately nowhere near the neighborhood where dialysis would be necessary (that’s when they go over 7.0 or so). Keep the rain dances going as there isn’t much concern as long as he keeps peeing. When he’s a teenager, I’m sure he’ll be really pleased to hear us tell stories of how intently we watched that little tube for signs of anything yellow.

A number of other small developments have taken place as part of the slow process of getting him past the surgery. They removed the arterial line from his navel as they think it may give the kidneys better blood flow and make them more productive. They tried to start another arterial line in his arm, but had difficulty getting it situated in his tiny little arms so they decided to go without it. They have freed up both of his hands so he can wiggle them a bit. They’d love for him to move a bit as it might stimulate the tissues and get them to release more fluid. They started feeding him yesterday as he hasn’t gotten any protein yet from the intravenous solution he’s been getting since he was born. Again, this can stimulate more movement. The 1ml drip of Pedialyte yesterday afternoon was increased to 3ml overnight and at noon today they felt he was doing well enough that they started him on breast milk (which we’ve been dutifully bottling up and freezing—I can’t imagine he’ll get through it all as whatever freezer they’re putting it in has to be close to capacity and at this rate he’s only getting about 4 tablespoons a day.) They turned down the ventilator yesterday to 12 breaths per minute just to see how he would do and haven’t had to increase it since. He’s been breathing over it most of the time without much effort so this may be the process of phasing it out (but I don’t want to speak too soon).

It’s good to see Rudy moving about a bit more. He still has his eyes closed most of the time, but his feet and hands wiggle regularly amidst the constant bobbing of the tubes across his chest as he breathes in and out. This morning, as the nurse was adjusting his position, his brow got wrinkled and his veins bulged out, giving indication that he would have been hollering up a storm but for the tubes down his throat. Certainly a pathetic site I’ll add to the list of things I pray he wouldn’t have to go through, but we see the positives for what they are—this is the first time he’s seemed able to even communicate emotion like this.

It’s hard to believe surgery was a week ago and Wednesday it will be two weeks since Rudy was born. Trish and I have gotten into a bit of a rhythm here at the hospital and we’re usually surprised at how fast the days pass. As you can tell, I occupy myself with learning about all the gauges and machinery here in the room. As I’ve been known to investigate the construction of buildings we visit and apply this knowledge to my remodeling projects at home, I think Trish is concerned that I might be planning to construct an ICU in our garage (she’ll mock me until she sees that home office deduction). My curiosity has me researching unfamiliar terms or converting metric units into tablespoons on my laptop so that I can then employ my new knowledge in the conversation the next time the doctor comes around. I feel a bit like the tag-along little brother the doctors humor; proud to display my understanding of terms they likely learned in high school biology.

We enjoyed some time with Wilson, Max and Olivia this weekend who seem be doing as well as can be expected. Yes, they’d love for us to be home and the good bye wasn’t easy, but it is good for them to see Rudy and perhaps glean why it’s important for us to stay with him for the time being. We continue to be so grateful for our family and friends who are walking with us through this challenging time. It truly is something navigable only one day at a time—before we know it, weeks pass and we can only trust it’s bringing us closer to home.

We’d appreciate your continued prayer for Trish’s dad as he came home from the hospital over the weekend, but is in significant amounts of pain. Please pray the doctors get the right combination of meds established and Dick will begin to experience relief from the pain and comfort as he recuperates. Also, please pray for stamina for JoAn as she cares for him at home. It continues to be so hard to not be in Kansas with them but we are thankful for Trish’s brother and sister-in-law, Steve and Michelle, who are close by to lend a hand and for Trish’s oldest brother, Rick, who is flying to Kansas this week from Indianapolis for a five day visit.

Anxiety on the Plateau

Last night and this morning were challenging. While Rudy seemed peacefully asleep most of the day yesterday, late in the evening and this morning he took on a bit more of a troubling appearance. While his kidneys are functioning and the team feels it is more a matter of time than a cause for alarm, he hasn’t been very alert for awhile and it’s hard to tell whether he’s awake or asleep–his eyes are puffy and he doesn’t open them very far. When he does open them the look seems a bit more pained as opposed to the quiet curiousity they used to have. This morning when I came in and got close he got more animated, the guages picked up and shortly thereafter a small tear formed out the side of his left eye.

His lower torso has a lot of extra fluid and shakes as he hiccups and makes raspy snorts out of his ventilator. Not the most comforting thing to have to sit by and watch. Dr. Reemtsen and Dr. Levi have both already stopped in (on Saturday!?) with the same message. We’re on a plateau, things are progressing, it will just take awhile. They are going to start Rudy on a different diuretic to see if that furthers his progress.

Emotionally, it’s been a bit challenging for us. After the drama of surgery earlier in the week and Rudy’s initial progress, it was easy to get lulled into thinking this was going to be smooth sailing, but today we’re encountering the reality of this process and the challenges of enduring it. Thanks for continuing to pray. We’re excited that the kids will arrive shortly and that Oma and Opa will be able to sit with Rudy for awhile. We do wish that the kids would be able to see the wide open, curious eyes we got to see earlier this week, but we’ll have to play that by ear.