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Skills, Guesswork, and..

a whole lot of Leo luck brings us to post op day nine! I can't believe it's been nine days of this marathon. We feel like those cross country runners do as they near the finish line. At this point quitting is not an option, but crawling sure seems like a good idea. We are staggering, swaying, and limping towards the finish line. Leo's shunt surgery yesterday was a success, though his neurosurgeon had to put in a whole new tubing system since the old tubing managed to worm all the way down into his abdominal cavity. It actaully ended up being a good thing because he was starting to outgrow the old tubing anyway. So this has saved him a extra surgery in the near future since the new tubing should last him for another 6 to 7 years. Whew!
The surgery itself went fine, although Leo came back pretty upset and stayed that way until this afternoon when they pulled his central line out. It was causing him a huge amount of discomfort so that once it was out, he was a totally different baby. Just to clarify for those who might not know about central lines...they actually slid a tube into Leo's heart from the artery in his neck. No wonder the little dude was complaining! Anyway after that (slightly traumatic) removal though done very smoothly by Leo's totally fantastic and capable nurse, he is almost back to his happy mellow normal self. Not quite normal, but almost. The real pivotal moment in his healing process was when we got to take him outside in his stroller for some fresh air and sunshine. He was so happy to be in his familiar stroller and to get some sun that when we came back in he slept a deep healing sleep for 4 hours and then woke up hungry enough to eat a full bottle. Tomorrow is another MRI to check on his shunt, and then as soon as the meds are weaned we can go home. It seems like that finish line will never come, and finally, we are closing in on it. Just a couple steps more....
Here are some pics from today:


  1. It's so wonderful that he's doing so well!

  2. So cute, Anna & Justin! Glad to hear about your outing today...healing for you all :-)Maybe now that the central line is out, he'll be less irritable and need less weaning off the meds. One could only hope and pray that you'll all be back home very soon.

  3. YAY! I am so glad to hear all this. What a great turn-around since earlier today.

  4. Wow, what a tough little guy; that's a lot to go through and he is doing so well. So glad for the good reports. :)

  5. Thanks for the detailed updates! I know you must be very tired.

    It's wonderful to hear how he got some fresh air, a decent nap and a full bottle. That warms my mama heart. I hope everything continues to go well and you are all home very soon!

  6. what a truly beautiful little man you have there. blessings to you and your family, a strong example of the power of love.

  7. so glad things continue to improve, big hugs and lots of prayers

  8. May Mother of God keep him safe:)


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