Sorry for the delay in updating about Emma Kate. It is much more difficult to take time to gather thoughts and type this time around. Simply because Emma Kate is a child and not a baby. Even though she has slept quite a lot since her surgery was complete it is difficult to leave her side.
Yesterday morning we were able to listen in during "family rounds". This is new since the last time we were here in 2009. Every morning in the ICU, parents have to leave for 3 or so hours so the Dr.'s can discuss each patient. Egleston now gives the option for parents to be waiting nearby the ICU and come listen when they are rounding on your child. Bethany and I enjoyed this because we got to hear multiple Dr.'s discuss Emma Kate's status plus the course of action for the day.
We learned that Emma Kate was doing well. Well enough, in fact, that she could leave the ICU and go to the Step Down Unit. The Step Down Unit is a million times more comfortable for everyone, so this was a pleasant surprise. The goal for the day was to let Emma Kate rest as much as possible and perhaps walk to the bathroom in her room. They also wanted to see her drink and eat as much as she was willing and able to do.
Overall, she had a good day. She slept on and off for the majority of the afternoon and evening. Her biggest discomfort, and they are a HUGE discomfort, are her chest tubes. They hurt when she coughs, they hurt when she takes deep breaths, they pretty much hurt anytime she moves more than just a little. Unfortunately, they have to stay in until they have stopped draining and they won't stop draining until she is moving around as much as possible.
She accomplished one of her big goals by walking to the bathroom yesterday afternoon! We have been trying to encourage her to drink as much and often as possible, but she has very little interest in doing so. It is hard for her because her throat is still very sore from the breathing tube. Her stomach started to hurt a little and she said she was ready to go to the bathroom. It was uncomfortable, again because of the tubes, but she was a big girl and made it all the way and peed for the first time since having her catheter removed. This is a big deal, as she needs to be taking in plenty of fluids and also letting out plenty of fluids. She walked again late last night to the bathroom but this time couldn't pee. As of 7:10am on Thursday morning, she has only peed the one time. Please pray that she will continue to want to drink her gatorade and will start going to the bathroom regularly. It is now 7:55am and she just peed! So let's just pray she keeps that up!
Emma Kate spent a few minutes this morning snuggling with Bethany in the rocking chair and I think that was heaven for both parties. She started to hurt a little, so she is currently laying in bed watching an episode of Good Luck Charlie. The remote where the sound comes out is pressed firmly against her ear and she is smiling from time to time. She hasn't had much of an appetite but we are hopeful that will change today. We just ordered her pancakes, cheese grits, eggs and a blueberry muffin and she is excited. We figure a bite of each will be a start.
We have to remind ourselves that she is still less than 48 hours removed from the Fontan. She seems to have come so far, so fast, that we find ourselves making sure we aren't pushing her too hard. My hope and prayer is that she rests and rests and drinks and eats to find the energy to start to feel comfortable walking. I pray that her sats stay in the upper 80s-lower 90s while she rests. I pray that she pees plenty and drains less and less so she can have her tubes removed. I pray that she continues to heal the way that she has and feels more and more like Emma Katie every hour.
Again, I can't say enough how much your prayers are felt and appreciated. We will try to update again later this afternoon. Just know that we are spending good time loving on our Emma Kate and are looking forward to letting you all do the same!