Still in a holding pattern (day 30 post Fontan)

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... read more >>

Ryan’s Fontan post-op day 27

Ryan and Ainsley putting together legos on Saturday We are in day 27 of Ryan’s post-Fontan hospital stay and we’re tired. Tired of not sleeping through the night, tired of being away from our family, tired of the hospital, and Ryan’s tired of being uncomfortable. Overall our spirits are high, but I can see cracks forming at the foundation... his crying every time... read more >>

Ryan’s Fontan – 3 weeks post-op

Day 23- Ryan has had steady waves of nausea throughout last night and today. Ascites can cause nausea so we are thinking it may be that Or an effect of the numerous oral medications he's taken. Ryan is truly my hero as he sips down the various concoctions the pharmacy brews on his behalf up to four times per day. We were visited by a magician who was able to bring a... read more >>

Ryan Update (Fontan day 20)

This is our 20th day in house and it doesn't look like we're breaking out of this joint any time soon. It seems we've run into a little snag called Ascites. Ascites is a pocket of fluid that collects in the belly and is typically due to the liver being upset about various things including trying to acclimate to the Fontan. Ryan started having tummy pain Friday and... read more >>

Ryan to Air Traffic Controller {Fontan update, day 17}

I feel like a plane that is circling an airport waiting to land…. we are literally hovering here due to chest tube output for the gazillionth day in a row. The chest tube that's draining is the same one we put in over a week ago in the ICU and has been putting out roughly the same amount (give or take 200ccs) per day. Other than that, there's really not that much going on.... read more >>

A winner, an update, and a list (because, of course)…

First, the winner from the Johnson Made Design giveaway is Bethany V. I sent you an email so look for it in your inbox. Second, an update - Ryan continues to progress toward recovery. He was able to get one chest tube removed this morning and his pacing wires. This means we are just waiting on one chest tube to stop draining before we can hit the road (Jack). His... read more >>

Ryan’s Fontan- post-op day 12 – of moving and visits

Yesterday was an exciting day as we were able to move out of the ICU and onto the regular heart floor. Ryan managed to wean off of every IV med and his oxygen while there. The only thing remaining is his chest tubes. As of yesterday they were no longer putting out ICU numbers and his chest x-ray looked slightly better.  Last night was pretty typical of our nights here... read more >>

Giveaway by Johnson Made Design

Print Giveaway
Hey guys!  I have some exciting news. My new friend Sarah Johnson agreed to let me host a giveaway - here - - on this blog - - from her Etsy print shop called Johnson Made Design.  I met Sarah a few months ago when I was speaking at a local MOPs group. She was at my discussion table and we hit it off right away. She's originally from Chicago and is also a recent... read more >>

Ryan’s Fontan – Post op day 8

Ryan's Fontan
Today marks our 9th day in the hospital and just over a week post-op from Ryan's Fontan procedure. It was a quiet, but busy day. We worked on keeping Ryan awake more and getting him up and out of the bed. This meant several walking trips to the loo, a short walk to the nurse's station, 2 sessions with PT, and at least 3 wheelchair rides, with 2 of them being to an... read more >>