03 February 2012

The Bionic Boy

Eddie is back in his hospital room and recovering well from surgery this morning. They finished up with him around 2p and his surgeon (Dr. Permut, below) and electrophysiologist both said things went very smoothly.



Hard to believe our little boy has a piece of hardware the size of a pocketwatch in his abdomen, but we're thrilled to have the peace of mind that comes with the ICD. It is standard process to test the device before they close him up and testing went perfectly. For those that are interested in what "testing" looks like, the electrophysiologist basically induces arrhythmia in Eddie's heart and then they let the ICD do its work. Sounds a bit scary and this kind of testing does introduce a cetain level of risk, but it's the only way to verify whether the device is functioning properly. And to top it off, they ran the test twice and Eddie recovered both times. Phew!

One interesting note . . . since these devices are made for adults and there is basically no market for them in pediatric cases, our electrophysiologist and the ICD manufacturer need to petition the FDA for approval to re-program the device to shock at lower maximum values. Again, sounds a bit scary, but the risk that he would receive the full charge is extremely small and they should be able to have him back in a couple weeks to upload the new code. They actually have to enter custom software code since there really is no off-the-shelf solution for what they are doing. Eddie is a true pioneer!



Eddie's incision looks great. We have to be careful for the next few weeks . . . no strenuous activity . . . but otherwise it should heal up ok. Obviously he's not too happy about the pain and discomfort that comes with being opened up, but he's doing amazingly well with only Tylenol. They've approved morphine for him, but so far he hasn't needed it.

We had the Infectious Disease, Anesthesia, and Social Work teams come by today to do their transplant evaluations. I think he passed :-) They're really just asking questions to determine if there are any hidden risk factors before they conference later this week. I know we still need to talk to the Physical Therapy team and a few others before heading home. The great news is that it looks likely that they'll let Eddie go home tomorrow afternoon! We're looking forward to being back home together as an entire family.

If everything goes well, we won't have any more overnight hospital stays until the transplant operation. We'll do our best to enjoy our bionic boy in the meantime!

11 comments:

  1. We are very happy to see the mom & the boy together. It's nice to see the Thomas Pillow there to help out. When I had open heart surgery they gave me a red pillow to hug. It worked out great! Hopefully you get to be there to celebrate Lucy's Birthday tomorrow. It will be nice to Skype and say HI!.. When I get there next time we compare scars and you can tell me what you have learned about the way a hospital runs. I'm so glad that you are such a brave boy. If I were you I would be very happy to see all the love signs on your door at home. You will be so happy to be with your sisters and brothers too. Have a nice sleep and tomorrow more wonderful thing can happen. We love you all so much. Grandpa "D"

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  2. Woo-hoo! So amazing that he might be going home tomorrow--that's great news! Way to go Eddie, Mom and Dad!

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  3. So relieved to hear everything went well. Looking forward to hearing you really are all home together again tomorrow!

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  4. As much fun as your other kiddos have had with non-stop play dates, I am sure they can't wait to have Eddie home and for everyone to be together again! So glad to hear things went well!

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  5. Just Up, thinking about your wonderful family, thinking about the growth that is happening. It's so inspiring to see you rally together and those who are around you reaching out to help. Have a wonderful day for Lucy's Birthday and celebrate that fact that you are together and moving forward.

    We Love You All.

    Thanks from those who are so far away, to those who are closer and pay attention to helping... We love and appreciate you for what you are doing!

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  6. Yay! Glad to hear all went well. We too, hope that Lucy Girl has a great day. We are heading to the mountains to be with Molly who is camping with my parents for her birthday! Again, we love you guys!

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  7. Such a fighter little Eddie is and his mommy and daddy are so strong.. The neighborhood is just not the same without all of you at home! Can't wait to have all of you back!
    ~Nikki T.

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  8. What a strong little boy. Thanks so much for keeping us all posted. And I love the picture of you, Eddie, & John. You all look great. Love you guys.

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  9. wow!! go eddie!! we are so happy that you are doing well!! we want you to know that ruby has been thinking a lot about you and praying for you every time she says a prayer!! we love you!!! we love you all!!!! xooxox

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  10. I'm so happy it went as well as it could! Eddie's like a super hero now.

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  11. He truly looks amazing! His coloring is so good, not what I'd expect from a boy that has been through what he has! All our love!
    Erin

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