02 April 2012

Happy April Fools Day!

I just now realized that it is April Fools' Day . . . it has been that kind of day . . . so I hope everyone was able to enjoy a bit of relaxing humor. On a fairly random note, I remember a story I wrote in elementary school that had to follow a "fortunately / unfortunately" narrative structure. For example, if I wrote, "Fortunately, I received a bicycle for my birthday" then I had to follow that line with something like, "But unfortunately, my handlebars fell off", which could then be followed up with "Fortunately, there was a hospital nearby." You get the picture. Well, that's the pattern that predominated at the hospital today . . . it seemed like every positive/negative development was followed in short order by its opposite.

Consistent with the developing pattern, Eddie's great day yesterday was followed by a pretty rough one today. He had a hard time sleeping last night and his Berlin pump struggled to fill properly throughout the morning. As time went on and he was showing signs of confusion and disorientation, we noticed that his chest tube wasn't putting out as much fluid, either. Once our nurse began stripping the tube and seemed to dislodge a blockage of some sort, Eddie's color quickly improved and his pump begin to fill quite nicely.

During the next hour or so, we were able to get very nice pictures of his heart via ECHO which have been next to impossible to get since his Berlin placement almost two weeks ago. We saw that there were a couple significant pockets of fluid in the pericardial sac that didn't seem to be draining through the chest tube. This is a concern since fluid buildup restricts heart function, leads to poor perfusion, and in Eddie's case, limits the effectiveness of his Berlin pump.

We tried positioning Eddie in a variety of ways, but we couldn't get any more fluid to drain through his existing tube. Either a blockage of some sort was making it impossible for the fluid to drain, or the tube was simply not accessing the parts of the pericardium where the fluid was sitting. Within a couple of hours, Eddie's perfusion was poor and his pump was again not filling well.

At that point, the best option was pericardiocentesis, or basically, using a large needle and catheter to access the non-draining portion of the pericardial sac. This is a relatively straight forward procedure, but as always, there are risks. One of the interventional radiologists did the dirty work with the help of ultrasound . . . need to know when the needle is in the sac and not the heart. As a precaution, Eddie was intubated.

Thankfully, the procedure went relatively smoothly and drained over 180 ml . . . that's more than 6 oz. of fluid from a sac that should normally have only 15-50 ml . . . for an adult! Our goal now, of course, is to keep that fluid draining consistently and monitor closely via ECHO/ultrasound. At this point, since the fluid appears primarily serous, we aren't too concerned about internal bleeding. Rather, we think this is an immunological response to the Berlin cannulae. Not much we can do other than to keep draining . . .

As we had hoped, Eddie was much stronger after the procedure and was extubated almost immediately. He was quickly asking for apple juice again :-)

Just an hour or so later, however, his heart starting beating out of rhythm again. This has happened a few times before, but always under slightly different circumstances. Just a few days ago, a good dose of potassium was all it took to bring him back into rhythm. We are hoping that a good night's rest along with doses of amiodarone will see him back in sinus rhythm tomorrow morning.

We are constantly reminded that Eddie's battle is no skirmish, but rather a drawn out campaign. As we look back over the past two months and add up the number of events, surgeries, and procedures . . . not to mention the difficult conversations . . . we are humbled by how little that is happening is within our control. In spite of this, we know that we are at our strongest when we respond to these challenges with hope and optimism rather than questioning, complaining, or giving into despair. As Montaigne puts it: "Not being able to govern events, I govern myself." And we also know that we aren't alone in this trial . . . each of you have offered to bear a share of our burden for which we are very grateful. Thank you.


  1. Wow John you are so eloquent with your words! I always knew you graduated as a comp/lit major from BYU but I've never had a chance to experience your knowledge and writing skills until now. Anyhow, I don't think I could feel so informed and understand as well about Eddie's condition or his day to day situations as I do if it weren't for your beautiful and well communicated blog posts and updates. I guess what I'm trying to say is thank you for keeping those of us that are geographically challenged, in the loop! :)

  2. Keep strong my friend. You and your family are leading by example.
    Please let me know if you need anything.

  3. Everyday before we pull up your blog I feel like I need to take a deep breath and say a little prayer, not knowing what new hurdle may have presented itself to all of you that day. Sorry to hear about roller coaster day. We hope that Eddie was able to sleep better last night and is having a better day today. Love you guys!

  4. Don't worrie Eddie....!!!My Emma had her 2 o 3(I've lost the number of the times in OR...) pericardiocentesis too while she was in ECMO! Today they've take off the tube for ventilation!And the EGA(we call it EmoGasAnalisis in Italy,maybe it is the same in US or Hemo Gas pheraps)were almost ok!!Now she's on C-PAP ventilation with Total Face Mask and sometimes only with Oxigen while eating by the gastric tube. I hope she could go on like this and go better day by day,waiting for a new heart,as Eddie...!!!God bless our children,God bless all the children!!God bless us,givin' us the strength to hold on!Our kids are stronger than we are!!!!!

    1. Hello Faith. Wondering how things are going. Feel free to respond privately at joharper@outlook.com

  5. Way to battle Eddie! Just imagine your cheer squad! Thanks for keeping us all updated. I especially love seeing Eddie and his trains and comfy blankets. Eddie, you are loved and thought of often each day. You have a pretty great family. And I agree with Faith, you are stronger than we are!