keep on keeping on

I've been meaning to update for awhile now, but things have been so busy the last two days. 

Everything with Emma Kate has been going well overall! She was moved to her own room on Wednesday morning, less than 24 hours after surgery!  Here she is all cuddled in her big bed.

She got up later that day and walked for the first time to the potty. She was so brave, but was NOT happy about getting up. The chest tubes bothered her so much (and continue to). She tried again to walk yesterday (pictured below) but again, it was super painful. You can tell by the look on her face how upset she is here.

This was taken last night before Emma Kate went to bed. Her color really is so much better!

Emma Kate has been doing well. She has been resting a lot in bed of course, watching movies, reading books, playing a little with a few toys. She has also had several visitors and gotten so many thoughtful gifts and cards. We are so thankful for all of our friends and family praying for her.

A couple of things we are looking at right now are her chest tube drainage, her heart rate and her level of pain. When someone has open heart surgery, they will have a tube or tubes inserted into the chest to allow the fluid to drain off. Apparently, chest tubes are incredibly painful. And this is evident in Emma Kate because she winces in pain when we have to adjust her in her bed or get her out for whatever reason. The drainage itself is expected to last a long time after a Fontan surgery. Possibly a week or a week plus a few days. Right now, the drainage seems to be slowing down, but there have been a couple of "clots" in the tube, which causes it to stop draining as much as it needs to and the fluid stays on the lungs. We don't want this. We want the fluid to drain off and dry up. We would ask that you pray for this drainage to slow down and remain clear. 

Emma Kate is taking several medications including three diuretics to help dry up the excess fluid. In order for her to stay hydrated with all the diuretics, she obviously has to be drinking a decent amount of fluid. But she isn't. She doesn't want much to eat or drink. She said she doesn't want anything because her throat hurts (probably from the breathing tube irritation). But naturally, she is a bird when it comes to food or drink. She sips and snacks all day, but never has been a big eater. This, in conjunction with the diuretics, is causing her to become dehydrated. Because she is dehydrated, it is causing her heart rate to jump. Last night her heart rate was about 155-160 bpm. She has typically stayed around 120-130, so that was a big jump. Because her heart is beating quickly, it's causing her to breathe more quickly and take shallow breaths. The shallow breaths lead to lower oxygen saturations. Last night she was in the low 80s (which isn't terrible, but not where we would like her to be). 

This morning, they started IV fluids to treat the dehydration. She isn't getting much (about 50 mils ever hour), but it has seemed to do the trick. Now at 7:35 pm, her heart rate is averaging about 130 and she's satting at 87-88. The goal is for her to be taking in more by mouth so she doesn't need to rely on the IV fluids to stay hydrated. So, I ask that you please pray for her appetite to come back. At least that she drink enough to hydrate her little body, but not enough to make her sick (her stomach seems to be a little sensitive). 

This is a slow healing process. She's honestly doing amazing only three days post-op and everything is moving a lot faster than I imagined. I keep needing to remind myself that she just had surgery on Tuesday!

Thank you for keeping Emma Kate in your prayers! We truly appreciate all of you.