Fontan update!!

The day after the Fontan was very difficult. Lilly was sedated but would only sleep for an hour at a time. It was hard to watch! She would wake up and talk (somewhat) to whoever was close. She told us that she wanted to be held quite a bit, which was really hard to tell her "no". I forgot the pain it causes to see your child in pain and not be able to help.
Her Epinepherine (a med that keeps her heart rate up) has been weaned completely off along with her Dexmedetomidine (a sedation medication) and now she is awake most of the time but has trouble falling to sleep. Although she is finally sleeping now!
Dr. Micheal said that we will be weaned off the Milrinone (a medication to help the heart squeeze better) as we are down to 0.6 mL now. We are also on Spironlactone. She had been on this Lasix drug in the past and will help 'take off fluid' or help her 'dry out'. We started her on oral medication today when before it was via IV.
About 20 minutes ago Dr. Micheal came in and gave Lilly some Versed (sedation med) to pull two chest tubes. She was awake and kept telling Dr. Micheal that he was doing a great job and actually did better when she was seeing what he was doing.
Nurse Jenny then was able to pull her ART line (IV) and once we get off the Milrinone we can get her Central IV out.
She has been on an ice and water diet and after the ART line came out Nurse Jenny allowed her a little treat of a sip of my white chocolate frappe. Now I will need to get Lilly her own as soon as she can eat because she liked it so much!
This morning has been a great day already, even if the weather is gloomy today.