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.


  1. Oh man--so glad to hear things improved throughout the day. Here's to praying for a good nights rest for Mom, Dad and Eddie! P.S. I hope the "Apple Juice Lady" doesn't have access to this blog due to your civil disobedience!

  2. Oh Eddie, you are just too sweet for words! Just checking in on you guys, sounds like an eventful day, or should I say exhausting?? Sleep tight ALL of you!! At least that's what I'll be praying for tonight. Love and hugs!

  3. What a Beautiful Boy, resting so quietly! So Great to hear that he is doing Well! I hope all will be sleeping shortly. We Love You Guys!

    "Grandpa D'

  4. :-) !!!! Go Eddie Go!!!!!!!!!You're strong as mine Emma!!!! Your civil disobedience is so lively!!!Ah ah, I'm a nurse too....sometime we use to turn a blind eye....it could be helpfull in some case..!! ih ih ih

    1. I saw your post yesterday about your little Emma. It's hard to hear about another little one going through what Eddie is going through. I don't know you but after watching our friends go through this I can imagine how difficult it is for you also. We will pray for Emma and your family also!

  5. Love the civil disobedience! Glad to hear that the ups and downs of the day ended well. Especially happy to hear that Eddie is doing so well overall. More prayers and fasting for you this weekend! Love you all!