Frazier's Full House Farm and the Adventure of Addy's Heart: The journey continues...post-op Day 5

Well, we have made it to post-op day 5 of the Fontan. It seems like ages ago that we were anticipating this surgery, and now we are just living the aftermath. It's amazing how much lower my stress level is at this point. I know that most people think that continuing to be in the hospital should be the most stressful thing. For us, waiting on the other side of those double doors, not knowing how things are going, and waiting to hear a real voice and see symmetrical breath sounds post-extubation are the most stress creating. Now we are just living it. It is just a careful dance of coordination for Heath and I to continue working a few days here and there, making sure our other children are taken care of, and making sure someone is there for Addy. Yes, it is exhausting, but as long as I watch this girl sitting up by herself in bed and watching her Dora while singing "we did it, we did it" and "oh no, Swiper the Fox", it doesn't seem so bad. Yes, it really does suck sleeping on the pull out couch, my bones and joints ache so much in the morning I swear I've aged 20 years overnight. The hospital food court choices get old very quickly, and our diet is nothing but a whim of a thought. But all those negative things pale in comparison to the joy we have with how well she has done. The defining moment came last night that we knew our baby girl was starting to feel better. She was sitting up in bed and I asked her, "Are you OK" and she says "Yea, I ok!" I will admit, I became a little weepy for a moment, but you just can't imagine how sweet those words were to hear. It means slowly but surely, our baby girl will be back to herself.

She made is out of oxygen yesterday and with good coughing is slowly clearing up the pulmonary edema and junk in her lungs. Her appetite has been great but she continues to vomit liquids (all but the 1.5 cal Pediasure that is so rich it's like a milkshake), probably because she hasn't pooped since Tuesday (i know, TMI). They are finally scheduling a bowel regimen so the hope is that her ileus will resolve with this and she will be able to tolerate fluids. The biggest negative is that her chest tubes both continue to drain a LOT. I'm trying not to dwell on this because this is the nature of the Fontan game, and I should be thankful that everything else is going so well. However, I can't keep those nursing thoughts out of my head of the "what ifs". It is ONLY day 5, and many are still in the ICU or on oxygen at this point so I should just quit my whining. But in the back of my mind, I keep thinking that we have had such a good course (quite unexpected and problem free), is this going to be our big downfall? Is this going to be what stops us in our tracks? Is this the other shoe dropping that we have been waiting for 2 years?

As always, I must continue to document our journey in pictures. I think it's as much cathartic for me as anything, so please enjoy! We would like to say thank you for all of the calls, texts, and visits we have received from everyone. The support helps makes this hellatious journey just a little easier at times.

This is right after we got to see her- Post op day 0, she still looks like our girl even with all the wires and tubes!

"Dare", he's always there!

The next morning, Post-op Day 1, she puffed up quite a bit overnight!

Finally extubated later on Day 1, she was much happier to have that tube off and a few wires gone!

Post-op Day 3 we made it to the floor, she still hasn't smiled or played yet and is requiring a lot of pain meds

She finally found her smile on Day 4! This was after she had her first bath since surgery and was feeling a little goofy! Pain is finally being managed a little better!