Day 6 Post Fontan

It's Snowing in Boston and Landen is doing GREAT!!  Landen, Ashley and I have really kept up with some decent sleep considering the circumstances over the past couple nights.  We have worked hard with the nursing staff to make sure he gets at least 4 hours of uninterrupted sleep in the night and all of us soak every second of that up!  Ashley and I have been alternating nights home or in the hospital with Landen.  That plan is only possible because of the amazing work Skip and Lori are doing with the girls at home.  Keeping things "normal"...even when things are far from it!

Landen is doing a much better job with his meds.  He doesn't love it, and he does fight us, but he keeps it down and doesn't puke it up moments later.  The small victories sometimes outweighed the larger ones.  He is really having a bad gag reflex from all the mucus, especially now that his chest tubes are both out as well as his pacing wires yesterday.  The great news is that today he got his foley out, but he still is not pooping, so let's hope that he starts that process on his own and that his bladder does its job and he pees on his own.  Otherwise, it will be time for another strait cath...which none of us want.  In all this, it's amazing that his new plumbing is NOT the thing that causes the most difficulty in recovery.  On that note, his chest x-rays have looked great.  He also had a non-sedated echo this morning which went VERY well!  We will likely get those results this afternoon. 

He and I took a great walk downstairs last night for his first journey off the floor.  He was more animated than I have seen him since Wednesday last week!  It was such a blessing to see a glimpse of the Landen we all know and love.  He is a little fighter, but he is ready to play!  In fact, just before the removed the cath moments ago, he was asking if he could get down and kick the ball across the floor.  I can't WAIT to take him with Ashley to the playroom for the first time without anything attached to him. 

We plan to walk as much as he can stand today.  Hopefully, this will help with the fluid in his lungs as well as his digestive system.  Then I will head home and leave Ashley and our little man here to power through the rest of recovery till tomorrow, while I have fun driving the jeep home in the snow storm in order to help clean up the house.  That is if Skip didn't have too much fun with the snowblower before I get there :)

Hopefully, tomorrows update will include the words "we are headed home!!" but that all depends on if Landen can poop and pee on his own.  I still can't believe THAT is what we are waiting on, and not his new heart parts...but here we are.  Thank you all for your thoughts and prayers.  We know that our role is to stay faithful, push Landen where we can and most of all just love on him, which is getting easier and easier to do now that we can hold him :)







Enjoying the journey,
George, Ashley, Landen, Maddie & Lyla :)

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