Still in a holding pattern (day 30 post Fontan)

July 30, 2015/Hearts


Ryan continues to be completely stable except for his chest tube drainage.  His ascites is under control, if not gone. His electrolytes are back to normal now that he’s off so many diuretics, and his vitals have been stable for weeks. We really are just waiting on the dang tube to come out.

He put out 120 ccs for the second day in a row. We had a week of 200ish ccs last week, so I guess this is the week of the 120s. We are starting our 5th week here. Is it too much to hope that next week (every week I have to push it another week) will be the week of under 100 ccs?

Because he’s so stable, we’ve been trying to get out of the room a little bit each day.

On Wednesdays, a fruit stand sets up in the parking lot between the two hospitals. We decided to go check it out.


Ryan enjoyed looking at all the food.


He looks so healthy in this picture – – I promise his tube is hanging off his side out of the frame.


And those herbs!  I smelled each and every one… and was very tempted to buy some basil or mint, just to have.


Zucchini, okra, garlic…. think of all the things we could make if we only had a kitchen!


Just realized his hair is looking a little Donald Trumpish…. I’ll get right on that.  In the meantime, please continue to pray that he won’t get sick, his chest tube drainage will slow down enough to go home, and that each of us would have the emotional stamina to get through.

Comments (6)

  • Gail / July 30, 2015 / Reply

    Glad to see Ryan’s smiling face outside of the hospital…look how far he has come in 30 days! Lots of healing going on in his little body. Sounds like his drainage output is going in the right direction…praying for continued good numbers and complete recovery and patience for everyone. Hugs from Annapolis!

  • Heather from Ontario Canada / July 30, 2015 / Reply

    You know he’s feeling better, when he can smile that big just for a potato!!!!
    mmmmm okra if I could find some okra around here I’d buy some to put in my soup 🙂 He’s hoping you guys can crash the place, sooner than later~~~~

  • Linda H / July 30, 2015 / Reply

    Glad you got to go outside and get some sunshine and fresh air! Praying for you guys to get out soon!!! Hang in there! Ryan is looking good!

  • Martha / July 31, 2015 / Reply

    I am so glad he continues to improve. Absolutely love that smile of his! Prayers continue from this end. Thank you so much for keeping us updated. Hang in there. Take care. M.

  • Natasha / July 31, 2015 / Reply

    He is just so cute! Delighted he’s doing so well and will pray that it continues. X

  • Michelle Lane / August 2, 2015 / Reply

    I have been following your blog and my heart and prayers go out to you. We have a mutual friend, Lisa Milton, who shared your story. My grandson Elliott is having the Fontan in 3 weeks. Praying for both of our boys.

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