17 March 2012

Weekend Miscellany

First, the important bits . . . Eddie is resting well today and is as comfortable as I have seen him since we've been in hospital. His nurses are wonderful and have done everything possible to help him relax . . . a very difficult task with multiple IV lines, heart and temperature monitors, and large cannulae running along one side of his head. Eddie really loves to have his teeth brushed since it is the only way he gets any water or moisture into his mouth. I can only imagine how hard it is for him since his breathing tube makes oral feeding impossible . . . and am not surprised that the liquid nutrition he receives via his nasogastric tube doesn't quite satisfy . . . diagram included to encourage sympathy :-)

After talking with our cardiologist and the CICU (Cardiac ICU) attending, it appears unlikely that we'll need to de-list Eddie as a result of his rhinovirus. They are going to ask the surgeon to confirm, but since there is no clinical evidence of the virus, level of concern is quite low. As a precaution, however, Eddie will stay in isolation for the next few days until cultures come back negative.

Overall, his improvement has been strong and his heart rate, blood pressure, oxygen levels, neuropsych function, etc. are in a good place. We are still concerned with his lungs since he continues to cough up fresh blood through his breathing tube, but overall, his AM x-rays look clearer and his chest sounds much looser than yesterday. Hopefully the blood will soon darken (dark brown/tan is much better than pink/red since it signifies old blood vs. new) and diminish. Also some concern about kidney function based on creatinine levels, etc., but he seems to be heading in the right direction.

For the rest of the weekend, our goal is to keep him relaxed and give his body the chance to recover from the stresses of the last week. Monday, when everyone is back in the hospital, we will assess his condition and determine when (not if) to implant the LVAD/Berlin Heart . . . most likely Tuesday or Wednesday.

On a more mundane note, I promised to share some pictures of our living quarters at the Waldorf Astoria @ Seattle Children's. As you can see, we're living quite comfortably and are in no rush to leave . . .

Ok, and when I wake up from my dream, this is actually what I see:

So while I don't have a relaxing pool at the foot of my bed, I can rest comfortably knowing that the door is only inches away. And then when the weekend comes, and I'm ready for some excitement, I can head down the hall to watch my clothes dry . . . who needs a vacation getaway?!

In all seriousness, the facilities here have made our stay incredibly comfortable. All laundry services are gratis, there are bathrooms and showers down the hall, and the fact that we have a twin bed in a private room to sleep in each night is far more than I originally expected . . . certainly much better than trying to lay down on the couch in Eddie's room. Makes me nostalgic for the 7th floor of V-Hall at DT (BYU dorms) . . . those wild and crazy days.


  1. Thanks for the regular updates - we are checking this numerous times a day. What a blessing to have such great care so close to home. We're praying for you Eddie! Freiheits

  2. So Eddie is doing better! This is great! The fact that he is getting stronger is also great. We pray that he will have the opportunity to become ready for the right heart when it comes. Better lungs and stronger boy will make the transplant go smoother and his recovery more speedy. Thanks for the update. I hope all is well through the night and until the Dr & Staff can re evaluate his position. So Grateful your parents are there John. So happy that Sarah could take more time for the other kids today... We Love All of You.... Get Stronger Eddie. We Love You!

  3. Those are some sweet accommodations! Glad to hear Eddie is resting a little more peacefully. For the time being anyway. It was good to talk to Sarah the other day, she sounded good, considering it was late! Anyhow, thanks for the post and continuing to keep us in the loop. We really appreciate it! Love you all~

  4. Now that they've torn down all of DT, this is as close as you're going to get to reliving those wild and crazy freshman days:) I was just happy to hear from Sarah that you guys were not sleeping in a chair in Eddie's room. We had wondered about that with all of the nights you've been there. It is really hard to think about Eddie being so uncomfortable right now. He is a truly an amazing little boy to be enduring all of this. We are so glad that he has such great nurses and that the rhinovirus isn't going to be an issue. We will pray for his lungs! Love from all of us!

  5. Ah yes - those carefree days of freshman year! Catching up on how you guys and Eddie are doing. It's amazing how the medical speak-ease starts to flow once you're immersed in it. NG tube is familiar - my son had one in the NICU and now has a G tube. I continue to pray for you guys and hope that the Berlin heart placement goes well!