Fontan Day 4: ICU Thursday

3:20 Mel and I slept for a few hours last night and were back in the PCICU bright early to see our Pinkalicious girl today. I knew today would be a difficult day for her. She is slowly but surely waking up and hating everything that is going on. Her three chest tubes are draining nicely and appropriately. She is on lasix, to help with fluid, but her eyes are still a little puffy. She hasn’t opened her eyes much, but has spoken occasionally. She told me she wanted to wear clothes, which is out of the question right now, so I tucked her blanket around her and told her she looked beautiful. She said she was “stuck.” I guess all of the lines and tubes have her feeling trapped, too. She is still on various drips, down to about 7 at this point. (Various ones for blood pressure, pain, etc.) Her nurse stopped her Precedex, the med that makes her sleepy and started her IV Toradol (Similar to ibuprofen.) Just now, a case was “rolling,” which is ICU talk for “new kid coming in,” so we were kicked out temporarily. Although still on oxygen, her O2 sats are running in the low 90’s and she’s still pink. She has been sipping on her juice all day little by little and is tolerating that well. A nurse asked, “She is three, correct?” Mary Clare, eyes still closed, said, “I’m not three. I am four.” Her voice is a raspy whisper, but she still has her spunk.

I’m convinced that she is having seizure “activity.” I want to call Dr. Turner in pediatric neurology and just let him know my thoughts. Not that anything can be done at this point. I just want to talk to him. I’m afraid that the trauma of surgery is causing her little brain to have seizures.

We laughed this morning after we called around 6 a.m. to check on her. Her night shift nurse told us she created a monster. She explained that after learning of Mary Clare’s great fondness of her green pappy, she just knew that she would love the “Sweet Ease,” which is a sugary syrup that nurses dip pacifiers in to soothe infants. Three years ago, as an infant, MC would have clear crust all around her mouth and chin from so much “Sweet Ease.” Turns out, she still LOVES it. The nurse said she begged for “sugar pappy” all night! I laughed but had to explain that she didn’t create our candy monster that we did that a long time ago!

All and all it has been a long day for us, but we know it is even more difficult for our sweet baby girl. We are so thankful for her progress thus far and hope and pray that she continues to be strong.

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