Let's Just Tap the Brakes for a Minute...

Well, Lia's had a rough 18 hours or so... She's still doing awesome by all Fontan standards, but we have encountered a few issues that we need to work through. She's having a rough time keeping her oral medications down. That's significant when you're looking at trying to go home where we don't have the luxury of IV pain medicine or diuretics. If she doesn't take her pain meds, then obviously she hurts. Then she doesn't want to move around, which she really needs to be doing. If she hurts, she doesn't want to eat, also important. She also needs to be taking her diuretics...most likely she'll go home on those. Those help her get rid of any extra fluid...and will help us get these awful chest tubes out. I keep hearing that once those come out, she will be a new kid. The chest tubes hurt. Plain and simple. They are cumbersome and keep her from moving well. They hurt and keep her from taking a good, deep breath...also a problem. 

The plan is to keep her comfortable with the IV pain meds for now. Hopefully, if her pain is down, she will get up and walk several times a day. This will help move that fluid out of her lungs and that will increase her chances of the chest tubes being pulled. I'm also hoping she will eat a little and will throw up less. We just have to find the right balance of encouraging her without pushing her too far. 

I've said the phrase "tap the brakes" several times in the last 24 hours. We were on a fast track the first two days...but I think it's important to stop and think about what all she's been through. We are only on day three of this thing and that's still pretty early. There's no reason to be trying to break any world record discharge day...even though we really like to win stuff like that. We need to slow down, take some deep breaths, and let her catch up. She's done great, and still is. We will figure all this out. 

In the meantime, I think the important thing to do is to decrease the stimulation around her. We are aiming for a couple of quiet days, where she doesn't have so many people around.  I think she may be able to tackle some of this easier that way. Thank you so much for offering to come and see her. We could not get through this without you guys. Our support system is incredible, and we haven't forgotten that. However, for the next couple days we are asking for not as many visitors to try and give her a chance to focus on herself. Please keep praying though. 

These bumps in the road could probably be labeled as "first world probs" of the pediatric cardio thoracic world. Overall, she's still done incredibly well. Her heart function and all of her vital signs, labs, and chest X-rays are looking good. All the doctors and nurses are impressed with how well she's done. None of that's changed. I'm thinking we will be looking a lot better soon...thanks so much for all the continued prayers. We love you guys.  

Here's the princess...sleeping it off. :-)