Emma Kate did wonderfully yesterday, much to the relief of her tired parents. Bethany and I got little sleep Monday night preparing for the Fontan. Fortunately Emma Kate slept through the night. We arrived at Egleston yesterday morning around 5:45 and we were taken back around 6. Emma Kate was happy and snuggling with her pillow, blanket and her new minion "Stuart". After taking her versed, she was out in 5 minutes. Anesthesiology came to take her around 7:30 and we went out to sit and wait.
Her surgery went faster than we expected, ending around 11:45. We met with Dr. Alsoufi and he confirmed that there were no surprises and everything went as planned. He let us know that these next several hours are critical as her body adjusts to her new physiology. We were able to go back and see her for the first time around 1:15. It is never easy to see our daughter with a breathing tube, chest tubes and wires surrounding her body, but what a relief it was to see her "post-fontan".
Post Fontan is something we have dreamed about for a lifetime. Now, our little girl doesn't have a scheduled surgery on the horizon. Not to say there won't be more, but nothing is currently in the works. And she has pink toes and pink fingers and pink lips. She has always been beautiful and now this is just pink icing on the cake.
Yesterday afternoon, Emma Kate began waking up and becoming more alert. When she would recognize that we were there, she would mouth that she wanted some water. We were told that she would have to be extubated and then wait 4-6 hours for her belly to wake up to prevent EK from throwing up. This was definitely the hardest part of yesterday afternoon/evening as we would only be able to tell her "soon".
She was extubated around 5:15 and, after many teary requests, received her first two medicine cups of water around 9:30. This was satisfying enough for her to close her eyes and sleep for an hour. When she woke back up, she looked at me and I thought she said "I want you to rub my back". As I started to rub her back, she said "No, I want water from my bag". We bought her a water bottle two days ago and that is all she can think about. She had a few more sips throughout the night and has, unfortunately, spit some back up. She did eat a few graham crackers and was able to hold those down. Our prayer is that she can build up the strength to hold food and water down more and more throughout the day.
Overall, Emma Kate is doing great. Other than spitting up some water, she did have a little issue with high blood pressure. They have put her on some medicine that has brought it down a good bit. Her chest tube drainage is looking good and this will be monitored for several days.
It is now 7:30am on Wednesday morning. We are currently waiting for "family rounds" where we can go listen to the Dr.'s discuss Emma Kate and her plans. We have heard that she might go to the step down unit tonight or tomorrow depending on how she is doing. The thought is also to have her try to walk sometime today or tomorrow. The more movement she can have, the better her chest can drain and prevent fluid buildup. We will update later after hearing the latest.
I know that Bethany and I often say thank you for your thoughts and prayers, but we are truly grateful and humbled by the love and support we have received. It is amazing to get messages from all over of people praying for Emma Kate. My phone died twice yesterday from the activity. Please don't let that stop you, it is wonderful. And please know that if we haven't responded, it isn't that we didn't get the message or that we didn't want to write back. We hope to be able to respond to each one of you when we have the opportunity. Until then, thank you with all that we are.