More progress!

Yesterday (Wednesday - Day 2) was a very calm day. Once we figured out a regimen to manage her chest tube pain, Stella was conked out for hours. They turned off her sedation and she woke up around noon requesting all her toys ... and Moana. Her team allowed her to just chill out all day, encouraging her to eat and drink and get out of bed. With the help of 2 nurses, plus Adam and my mom, I was able to hold her for about 30 minutes. Doesn’t she look thrilled?

In all fairness, Stella was pretty upbeat for a kid who just had her chest cracked open, but she refuses to eat a thing. It’s like the good ole days! 😩 Apparently it is totally normal for post-Fontan patients to have uncomfortable stomachs but we are really trying to encourage her to try some food because if she doesn’t eat they are talking about dropping a NG tube. For those of you who are new around here, Stella was tube fed for the first 14 months of her life. She had a NG tube through her nose for 6 months and then a G-Tube placed in her stomach. She has some serious oral aversion issues to being force fed and I can still hear that feeding pump beep in my sleep. Please pray it doesn’t come to that! We worked SO hard to wean off the feeding tube 2 years ago.

Last night was much quieter than night one. Stella woke up in a lot of pain once, but we had our very favorite nurse, Martha Claire, taking care of us so she got her comfortable quickly. Around 4 am Stella started throwing up which lasted until the morning but that seems to have passed as well!

And I’ve been saving the BEST for last: Stella just got her medial chest tube out! That bad boy is gone, as well as the surgical lines that ran to her heart. With the help of a little Ativan, she sailed through it like a champ. I’ll have what she’s having.

The plan the rest of today is to get her out of bed one or two more times, remove her arterial line later today and encourage food. From the looks of it, her other two chest tubes still have a day or two before those can come out. I’ll spare you the details.

We are feeling incredibly confident in her progress and equally grateful for the continued and committed prayers for sweet Stella. And of course, we are thankful for Moana.