26 April 2012

Downs and Ups

We figured the smooth sailing wouldn't last forever, but we weren't expecting this. Earlier today, Eddie started showing mild neurological changes (stopped playing, slurred speech, abnormal sleepiness, difficulty moving his left arm) and after observation, the doctors think Eddie probably suffered a mild stroke. The major risk of being on a Berlin Heart has always been clotting and stroke, and since we've intentionally kept his Heparin levels low, there may have been some clotting happening in the unobservable part of his circuit. (For those of you unfamiliar with the Berlin Heart, probably best to read my earlier posts here or here or Bing it.)

He was immediately taken for a CT scan to determine if there was any bleeding or swelling which, thankfully, there wasn't. An MRI would be able to tell us much more about his condition but, of course, since a filing cabinet-sized air compressor is keeping him alive, MRIs are not in Eddie's future. So we'll run him through another CT scan tomorrow morning which will allow us to compare images from both days . . . it was simply too early this morning to see any impact.

So the good news . . . is that Eddie has made rapid improvement throughout the day. By the time I left the hospital in the mid-afternoon, Eddie was moving all of him limbs, verbalizing, and generally acknowledging that he was understanding what we were saying. He even managed a couple crooked smiles, asked for water, and then requested yet another showing of The Polar Express (a sure sign he is on the road to recovery).

When I checked in with Sarah this evening, not only had he continued to strengthen physically, but he also managed to pass the swallow test (yes, the dreaded swallow test again) and even go for a stroll in his wheelchair around the ICU. As you can see from the wonderful photos below, he looks great and we are so amazed at his resiliency and strength.

Please also take notice of the amazing transformation of the Berlin Heart compressor from a cold, stolid (yet efficient) pumping machine to a much kinder, gentler Thomas the Tank Engine. A huge tip of the hat to the wonderful Child Life program at Seattle Childrens and, more specifically, to the those that have bent over backward to bring a smile to Eddie's face. Not only are they responsible for the large Thomas the Tank Engine poster in his room (made by hand with magic markers . . . THOUSANDS of individual strokes . . . truly impressive) and the Berlin compressor conversion, but also for bringing beautiful dogs to his bedside to give his hands a wonderfully soft resting place. We can't rave enough.

So here we are again, traveling down a road we never expected, but gaining strength all along the way. We're tired, but know that Eddie is in good hands . . . and not just those of his nurses and doctors :-)

We hope to have a less complicated update in the morning. We love you all!

The Artists

Berlin Heart Transformed

The Train Embarks

Speaks for Itself


  1. So sad to hear Eddie has had a small set back. We are so thankful it was not worse. So many happy things, each day and the LOVE and care of all who watch over Eddie. We are so grateful to all of you in Seattle and Duval for taking the Family into your hearts, minds, and your prayers. We love and appreciate your kindness and care. We love you Eddie from the tips of your fire engine slippers to the white spots of light on your head. We know that many are gaining strength as they watch your courage and struggle. I know that Heavenly Father has big plans for you! I am Jealous about that Thomas Train you have and the popsicle.

    Thanks Sarah & John for opening these private moments to so many who follow Eddie each Day and Night. So many Prayers and blessings flowing your way. Knowing that Eddie and the family are in Heavenly Fathers' hands, helps us all to take blessings that come each day with gratitude and thankfulness to him. For the People and the Technology that are there to help you all, but also for the love and devotion you share with us and the tremendous fight that Eddie is continuing to make, we are so blessed to see it unfold each day. Keep fighting Team Eddie, we love you so much. Grandpa 'D'

  2. We follow these ups and downs daily for Eddie. My heart sinks on days when there is bad news. We pray that the stroke will have no lasting effects for Eddie. Loved the Meridian article. You are all so inspiring. We wish we could do something more for your family right now. We love you guys!

  3. Loved the article, it is so well "articulated" (pun intended) har har. It must be hard to relive each experience again by sharing it, but I'm sure you are helping uplift others. As always, thanks for pictures! We love you guys!