More urgency…

What we hoped would be a peaceful Saturday after a week of too many loops doesn’t seem to be turning out that way.  The nephrology team was just here and they recommended starting Rudy on dialysis.  They looked at the progression of drugs and procedures we’ve had this week and see several shots to the kidneys.  Dr. Rick gave it consideration but decided to hold off.  It’s another one of those debates we see here among the team when it comes to caring for Rudy.  Starting dialysis now would keep toxin levels from becoming dangerously high.  They’re trending up, but not there yet.  But the downside would be that dialysis might take pressure off the kidneys to start functioning and shut them down longer.  Emotionally, putting Rudy on dialysis just feels like a big step backward–another means of support being brought in for another one of the key systems of his body.  For now, the team will be taking frequent labs to watch levels closely in the event they reach a place where there’s no other option but to start dialysis.

In the midst of this, Rudy looks very comfortable and calmly opened his eyes for about 20 minutes while I stroked his head and prayed for him.  The irony of this twist is that both chest tubes are putting out very little of anything.  While we’re not declaring victory over chylothorax yet, things look good–except that we seem to be exchanging one crisis for another.  So, Rudy, I’m not joking anymore…please!!!

Two Weeks and Counting…

It’s so hard to believe that Rudy is two weeks old today!  The days have blurred together since we’ve been here and it’s amazing how fast time passes.  At week two, we find ourselves continuing to wait…to wait for Rudy’s kidneys to kick in, to wait for the ventilator to be taken out, to wait for all the numbers to be where they need to be.  They tried taking Rudy off the ventilator yesterday and he lasted about 10 minutes.  It was concerning to us but the doctors said it is pretty normal to make short attempts like that to exercise the lungs and make gradual steps toward getting him off completely.  It’s getting a little hard for me to watch the patients on either side of us come and go and not get discouraged but we keep reminding ourselves that this isn’t a race and Rudy is doing well for his situation.   

Rudy received his first toy this week…a gift from the Child Life Office here at the hospital.  He’s now the proud owner of a musical aquarium that we fastened to his monitor rig.  It bubbles as the little fish sway back and forth to classical tunes.  It’s actually quite soothing and I find myself getting lulled to sleep in the late afternoon right along with Rudy!  Ha Ha  He likes it alot…he was quite alert the day he got it and when we turned it on for the first time he began to kick and move his hands around and his eyes were fixated on it!  It was so fun to see him react to it!!!  So now his view is a little less sterile and a bit more fun. 

Rolf and I are doing well although I’m a bit steamed because he got mistaken for a UCLA student yesterday when we walked down to the Student Union to run a couple of errands and on Sunday I got mistaken for Max’s grandmother!!!!!!  NO FAIR!!!  I know I’m looking a bit haggered these days but come on…not to mention Rolf has alot more gray hair than me!!!!  Anyway, my ego has taken a hit but my postpartum body is bouncing back quickly.  🙂

Please continue to pray for steady progress and for our patience with Rudy’s timeline.  His kidney function is holding steady, but will take time to get where it needs to.  As he’s taking breast milk well through his feeding tube, the next milestone will be to get off the ventilator and have the breathing tube removed.

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.

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.

Another Milestone Surpassed!

Well, it is almost 4pm here on the west coast and I’m wondering where in the world today has gone.  We left Rudy’s room around 11:30am so they could start the “closing up” procedure and Dr. Reemtsen met us in the waiting room about an hour later to let us know he was done.  All remains stable so far…although Rudy is going pee pee, his kidney function right now is still cause for concern but all the really smart people around here seem to think that it is just a matter of time. 

So now we pray against any infection from preventing his healing and we begin to pray for the next hurdle…getting him off the ventilator and breathing on his own.  Once that is accomplished then he needs to start learning how to eat.  He’ll be given my milk through a feeding tube at first, then gradually work his way up to learning how to nurse (we pray!!!) – not an easy process from what I understand.  But that’s work left for another day…today we are just sitting and resting with Rudy and enjoying looking into his eyes every now and again when they open.