One Week Post Fontan

Reality check. It’s been a week and Stella is going to be discharged soon. I’m really trying suck it up and remind myself that most kids spend 2-3 weeks inpatient after their Fontan. But if I’m being completely honest, I’m over it. I was over it at 6 pm Saturday night when I left the hospital and a crying Stella to finally spend some time with my big kids. I’m tired, the twins are sad and Stella is ready to bust out of room 16. 

Here is where we stand:

Yesterday (Palm Sunday or *ahem* Master’s Sunday for you Tiger fans) was a quiet day. Weekends around here are depressing and usually pretty uneventful, so she spent the day in bed weaning her oxygen and pain meds. 

By this morning we finally turned her oxygen off and she’s been totally stable without it. Her O2 is hanging out around 88 which is just fine - anything above 85 and the cardiology team is happy because her Fontan is  fenestrated.

Over the weekend Stella blew her remaining 2 IVs so all her meds need to be given orally which has become a complete battle. She loses her mind at the sight of a syringe and will make herself throw up if we force oral meds. I’d be impressed if it wasn’t so heartbreaking to watch (and mind numbingly frustrating since she didn’t do this a week ago.)

But the biggest issue that’s keeping us admitted at this point is fluid in her right lung. Which think about that for a second. She had open heart surgery a week ago and that’s our biggest complication. Chill out, Kate. But the fluid was there on Saturday and after a chest x-ray this morning it remains unchanged - which can become a major post-op complication if it isn’t monitored and treated properly. Right now the plan is to increase her diuretics in hopes that helps move the fluid out of her lungs. And in all honesty this is a totally normal complication post the Fontan. But it’s still a bummer.

So tomorrow morning we go for another chest x-day to see where she stands. From the discussions I had with her team tonight it sounds like they will send us home as long as it looks the same or hasn’t gotten worse. We live so close to the hospital I told them I would bring her in every morning for a chest X-ray if it means we can sleep at home. I don’t know why they that found that so funny? I get the idea this isn’t a negotiation. 

Oh and to spice things up we got a 4 month old roommate today. I like to think I’ve rolled with the punches the last week  but for whatever reason, I took this curve ball the hardest. Selfish? Yup. Do I need 3 more adults and a screaming infant in our hospital room right now? Nope. I’m sure they are all lovely humans but its a little crowded with all my extra hormones. 

Hopefully tomorrow is the big day! Which would be incredible. And if we have to hang out a while longer we can make that work as well. I have to remember (and perhaps pinch myself) that Stella is recovering at lightening speed. We are going home soon. Her surgery was a success and her surgeon discovered a potentially fatal complication and was able to fix it last Tuesday. We are living without the next surgery hanging over our heads (hopefully for a long long time). Sunday is Easter! We have everything in the world to be thankful for. Go Stella!

Pictured below: 1) Connor and Ellie spending some time with Stella today; 2) Stella in a wagon on the way to her chest x-ray; 3) After her bird bath; 4) Andrea brought a cupcake FTW (what bath?); 5) Hiding from mom and any form or medicine