31 March 2012

Worth 1,000 Words

I came back from the cafeteria and this is what was waiting for me. An empty bed and Eddie watching Polar Express in his La-Z-Boy. Didn't I say every day brings new and unexpected surprises? This is Eddie's first foray out of his hospital bed in almost four weeks!

30 March 2012

. . . To Be Thankful For

Eddie is recovering in his room tonight after a successful pump change. He was under general anesthesia for the entire procedure and was clamped off for about four minutes. We are thrilled there were no complications.

When the Berlin Heart company sends their compressors and pumps to hospitals, they do so only when a specific patient is being treated. In other words, hospitals do not carry these items on their shelves for indiscriminate use. As a failsafe, they always send redundant units as backups should the originals fail. In this case, the compressor was (and still is) working fine, but the pump had to be replaced and will probably be shipped back to the manufacturer for analysis. That means we no longer have a backup pump so an additional unit was ordered today . . . should be on hand tomorrow. Phew!

On a separate topic, we are looking forward to LDS General Conference tomorrow and Sunday. For the uninitiated, these conferences are held twice a year (first weekend in April and October) and are broadcast via satellite to over 7,400 church buildings in 102 countries. In addition, the Church streams the meetings live on the LDS.org website so anyone who chooses can watch and/or listen. Whatever your faith tradition or religious leaning, I'm certain you'll find something to stimulate profound and existential conversation . . . at least more so than watching Louisville trounce Kentucky tomorrow!

Have a wonderful weekend!

There's Always Something . . .

Consistent with previous comments about how unpredictable things can be around here, Eddie will be going back into the OR this evening to replace his Berlin pump. Fibrin built up quickly in his pump overnight and, after talking to doctors at Berlin Heart (the company), we've decided to put a new pump in place to eliminate the risk of clotting and stroke.

This isn't necessarily unexpected, but it also isn't exactly normal. Typically, fibrin builds up over days and weeks rather than hours. These fibrin deposits sometimes dissolve or break free and float harmlessly through the bloodstream. However, they can eventually form embolisms (clots) and, if those end up going to the brain, may cause a stroke. Replacing the pump is the safest way to avoid these risks altogether.

Of course, pump replacement comes with its own risks. We haven't had the consult with surgery yet so we don't know the specific details of how they will proceed. We do know, however, that this will not be an invasive procedure and Eddie will not be required to go on bypass. Rather, the pump can be unfastened externally after the doctors clamp the valves shut. So in essence, while the pump is changed out, Eddie's blood will stop circulating through his body for 1-2 minutes which the doctors assure us is well within the safe zone.

So yet again, we're grateful for wonderful doctors, generous friends, family, and co-workers, and everyone else that is keeping Eddie in their thoughts and prayers. Procedure is scheduled for 5pm PDT.

Finally, in yesterday's post I mentioned that we're bound to run into "hiccups" from time to time considering Eddie's overall condition. Take a look at the video below for a more literal take on the subject :-) We love you all.

29 March 2012

Thursday Volatility

It's really remarkable how quickly things can happen around here. Last night was rough for Eddie with a bout of diarrhea and, more seriously, pretty frightening arrhythmia through the early morning hours. Thankfully, he is resting very quietly now and the day ended on a much more upbeat note.

We spent several hours during the night worried about his irregular heart rhythm, but since his cardiac output seemed ok and his Berlin was filling well enough, it didn't qualify as an emergency. During early rounds at 8am (Surgery and ICU staff), there was discussion about needing to be prepared to go back on ECMO if his rhythms didn't come back in line so that was an unwelcome shock. Again, this was a case of very smart doctors not knowing exactly what was going on and trying to prepare for worst case scenarios.

During cardiology rounds later in the morning, our transplant cardiologist called into question any potential for going back to ECMO. He felt that Eddie's rhythms, while dangerous, could be managed through medication (amiodarone) or supplements (potassium) and that talking about ECMO was going a little overboard. That was definitely encouraging to hear, and he went on to emphasize how phenomenally Eddie has done on the Berlin pump and that no one should have expected this to be easy. There are bound to be hiccups along the way, but Eddie is in as good of a position as any previous patient.

Once the amiodarone and potassium kicked in after rounds, it was less than an hour later that he reestablished a normal sinus rhythm. So encouraging considering the frightening turn we seemed to be taking earlier.

The Apple Juice lady (aka the Speech therapist) came by in the morning to reassess Eddie's swallowing ability. Great news! Eddie is now approved to drink "1 oz. of honey-thick liquid via sippy cup with restricted flow valve" five or six times a day. If that doesn't sound delicious on paper, just swing by the hospital and we can arrange a free tasting . . . you'll be hooked at the first drop.

In other miscellaneous news . . . Eddie received his wish and was given the green light to brush his teeth with his special blue foam toothbrush soaked in water (see below). Ok, so the Apple Juice lady didn't actually say he could do this, but our nurse was awesome and turned a blind eye while we exercised our right to civil disobedience.

Other good news . . . while it's hard to tell from the photo below, Eddie completed his nitric oxide wean. Most importantly, this means that his nose and throat are clear except for his nasal feeding tube. Two down and one to go.

And finally, the handsome devil even got a shampoo before crashing hard. Sleep tight, little man.

28 March 2012


You've already seen the bear, but today we introduced him to Eddie . . .

And apparently the experience wiped him out . . . sleep tight, little guy.

Sarah managed to tear herself away from the hospital so I'm back to doing hospital duty. We had a good day today with some small victories and a few things to work on. The Speech team made their much anticipated return visit this morning and Eddie enjoyed 2 or 3 swallows of apple juice and a spoonful of apple sauce before decided he'd had enough. Not surprisingly, he started asking for warm chocolate (his version of hot chocolate) as soon as he saw his door of opportunity open a crack . . .

His Berlin pump hasn't been filling as well lately which generated a lot of discussion at rounds this morning. He is showing very strong signs of cardiac activity (warm toes, strong pulse, good color) which is good, but not necessarily what you would expect if the pump isn't filling. A lot of conversation as well about the quantity and quality of output from his chest tube . . . very bloody in appearance but very low hematocrit levels. If he was bleeding internally, we would expect to see much higher hematocrit levels . . . more comparable to his regular blood draws.

So Eddie continues "to boldly go" where few heart patients have gone before and our seasoned cardiologists and attending ICU doctors are at times left to "figure it out" through trial and error. Sounds scary, but really understandable since they are face-to-face with something they haven't seen before. In fact, while I can't speak for Sarah, I actually find these conversations fascinating and encouraging because you're seeing the decision-making process happen from start to finish . . . the scientific method in action. Some hypotheses are proven correct and others . . . not so much. But in every case, we have multiple doctors and nurses bringing hundreds of years of combined experience to the conversation. Difficult to arrive at consensus, but usually reaching a decision that everyone feels is the best way forward.

27 March 2012


A genuinely quiet day for the most part. Eddie was very responsive this morning and seemed to have recovered very well from the previous day's surgery. He loved reading The Three Little Rigs and Olivia Saves the Circus, but then again, who doesn't love reading about precocious pigs that fill in for circus performers when they "get sick with ear infections"?

Biggest bummer of the day was that Eddie was asleep when the Speech folks came around so he didn't get his swallow test, so yet another day he'll have to wait for apple juice. Hang in there, Eddie! They'll be back again tomorrow . . .

Overall, the doctors are still trying to get a handle on how to balance his anticoagulation needs (to avoid clotting and potential for stroke) with his risk of bleeding. We have to keep his blood thin enough to prevent clotting as it passes through the tubing of his artificial heart. Basically, blood wants to coagulate the minute it touches a foreign surface and, in Eddie's case, this would be extremely dangerous since they could make their way to his brain causing a stroke. As a result, we and the nurses spend a lot of time monitoring his pump for fibrin buildup as well as watching his general behavior for signs of impairment. So far so good!

I found a very poignant New York Times article from a few years ago which outlines some of the specific issues we have dealt with and continue to face now that Eddie is on an artificial heart. The paragraph below is from that article and describes almost exactly what Eddie is confronting:

All patients with mechanical heart pumps face risks; the greatest are linked to bleeding, clots and infection. Whenever blood flows through foreign materials and artificial valves and chambers like the ones in a heart pump, it tends to form clots, which can be disabling or fatal if they reach the brain. Drugs can prevent clots, but also increase the risk of bleeding, and so doses must be fine-tuned to keep a patient on the thin line between two potential disasters.

Sarah's doing bedside duty tonight so be sure to include her in your nighttime prayers :-) Not easy to get a good night's rest on those old vinyl couches. I love you, Sarah!

26 March 2012

At the End of the Day

It always seems to be so late by the time I get around to these updates . . . where does the time go? And apologies for leaving most of you hanging without much of an explanation in my previous entry. There really is no letting up these days . . .

So Eddie is doing ok after his procedure this afternoon. It was all a bit of a surprise for us since we had no idea he would be going into the operating room for the PICC line insertion. Since his central line was in his groin and thus much more susceptible to infection, we knew from the beginning we would need a more secure PICC line in his chest. However, with all of his ECMO and Berlin Heart excitement, the PICC line kept getting deprioritized (rightly so).

We discovered this morning that the IR team (Interventional Radiology) was taking Eddie to their operating room and he would need to be anesthetized for the duration. After enduring yet another discussion of risks for this procedure and signing the consent forms, Eddie rolled away. This time, however, we were allowed to tag along all the way to the OR . . . and Sarah even got to ride on the bed reading stories to Eddie.

When we arrived at the operating room, it looked something like the picture below. Basically, by using a combination of ultrasound and fluoroscopy, the doctors are able to get real-time, living images from multiple vantage points. Pretty amazing.

After a little more than an hour, the nurses brought Eddie back to the room for his daily dressing change and echocardiogram. There really is a lot of choreography that goes on in a hospital since everyone would prefer to minimize the number of times Eddie needs to be sedated, anesthetized, or otherwise drugged.

On the topic of sedation, Eddie has been receiving a continuous infusion of anti-anxiety and pain medications since he was admitted to the ICU three weeks ago. We are currently in the process of weaning him, but it will probably take two weeks until he can come off completely. Goal of moving so slowly is to avoid any withdrawal complications. While he has been a bit more lucid each day, we are happy to take this process step by step and are in no rush.

A final bit of good news . . . we heard Eddie's first real laugh in three weeks this morning. He was smiling quite a bit and really loved having Sarah in his bed reading to him. We are hoping he can rest up tonight and recover from today's operation so he can pass his "swallow" test tomorrow. If he does, he'll finally get some of the apple juice he has been begging for the past few weeks. Fingers crossed!

Back in Surgery

Eddie just went into the OR since he needs another PICC line in preparation for his eventual transplant. Beginning to feel the strain a bit of this ongoing saga. Hopefully will have an update soon.