Getting close...

So much can happen in 6 days. It's been 6 days since Lia's surgery. 6 very long, sometimes very challenging days. But we are blessed. We know we have been covered in prayer...well, now for over 5 years. We can feel it. We feel it in every difficult moment, and we feel it in every single victory.  We know we have definitely had many more victories than challenges, but we are ready to get home. I didn't update the blog yesterday, but I'll give you guys a short list of our challenges and our victories... That way you can see how far we've come.  It's mind blowing to recall it all, and I think you'll be impressed. 

Challenges:

Open Heart surgery.  This includes anesthesia, precise line placement, time on heart bypass, sewing in the 22 mm graft from her inferior vena cave to her pulmonary artery, controlling the bleeding, and sewing her up. 

Chest Tubes. This is a big deal with any heart surgery, it seems even more significant with a four year old and this particular surgery. After the Fontan, the kids seem to drain a long time from the chest tubes as their bodies adjust to their new circulation and their lungs and thoracic cavity recover from the inflammatory process of the surgery itself. As I mentioned before, chest tubes hurt. Our sparkly eyed, sassy, never-stops-talking, Lia was nowhere to be found while those were in. 

Pain Control. We expected some of this. She complained of back pain and side pain the most, but most of that is thought to be referred pain from CT's. 

Oral Medication. This has been a biggie. Lia has had a really difficult time taking some of her oral medication. She's always been a great medication taker, and is still taking her regular meds she takes every day wonderfully (big blessing). She is struggling to take Motrin, which is extremely important. It helps her pain control, but also helps to keep the pleural effusions (fluid outside of her lung) in check. Without the Motrin, she doesn't feel comfortable. I'd she doesn't feel good, she doesn't get up and walk. If she doesn't get up and walk, she doesn't get stronger, doesn't move her food through, and doesn't move the fluid out of her lungs. We have changed her diuretics to pill form, and are giving her that in food. She has to have the diuretics for a while to ensure those pleural effusions decrease. Somehow Corey has managed to turn things around with the Motrin. He's had some success getting her to take it. I just pray she keeps that up because I'm on tonight while he goes home with the boys. He's been named "The Medicine Whisperer". I sure am grateful for Corey. We make a good team, I couldn't do this without him...no question. 

Oxygen Saturations. So for most of Lia's life, she has had to live with her deoxygenated blood mixing with her oxygenated blood. This caused her O2 saturations to run anywhere from 75-85%. Yours and mine run 98-100%. Lia did fine with a sat in the 80's...but after the Fontan, her deoxygenated and oxygenated blood are now separated like the rest of ours...(well, kinda like the rest of ours). Her sats will eventually be in the low to mid 90's. She does still have the fenestration (pop-off valve) so if her BP increases, she will shunt deoxygenated blood through the fenestration to the side with the oxygenated and that will bring her sats down.  

Now, for the victories....

Surgery. Her surgery went perfectly. There were no complications regarding the logistics of the particular list of to do's and tasks to accomplish in surgery. She did run into an atrial dysrhythmia in surgery that she converted out of on her own. They placed some permanent pacing wires in case at some point in her life she needs a pacemaker. If she doesn't need them, we'll never know they are there. So far her rhythm has been ok and they watch it constantly. I can stare at her monitor for hours and talk myself into thinking I see different things...but I trust the experts. How many times have I told my own patients' parents in the NICU to stop focusing on the monitor? Too many times to count...but it isn't easy to do...

CVICU. We were barely there. I don't think we stayed in the CVICU for 24 hours. She did perfectly well recovering. They tweaked things throughout the day and night she was there in the immediate postoperative period and she responded appropriately to those things. I learned a lot that night. It's all really interesting...in a "personal love of critical care" kinda way. Interesting, but overwhelming when it's your own little love bug lying in that bed. We had absolute fantastic nurses in the CVICU. To Monica, Justin, and Delaney...thank you. Thank you from the very bottom of my heart. 

The Cardiac Floor. Our nurses here have been great here too. We've really been blessed with some good nurses. It means so much to me to see that. I love nurses. I feel like we do some pretty incredible things. I have such a different understanding of what good nurses mean to the family of the patient. We can make or break the experience. It makes me proud of the people I work with...and the nurses we've encountered here. 

Chest Tubes out quickly. Big, big, victory!!!!!

Chest X-rays looking good, and improving.  Huge deal. 

Oral meds going in better...:-)

Go for launch on poop!!!  Finally jumped that hurdle yesterday...and she feels way better for it. 

We need to eat more...but what's new?

Oxygen off today. Her sats are low 90's when she's resting and dip into the mid-high 80's with exertion, but they are ok with that. I happen to be thrilled with those numbers!  I honestly thought we'd never see the 90's. Big win for Lili!!!!

We are getting close to being able to go home. We are ready. We are grateful. Keep praying.