TGIF

 Thursday we went down to the cafeteria and got her a fresh strawberry, banana, and pineapple smoothie. That seemed to remind her she liked food and then things got progressively better. She has pizza for lunch and dinner.  

After dinner, we got a call from Uncle Mark from Montana. He and cousin Choral are on a road trip out this way, and they had just come into Philly.  They were able to come into the lobby at CHOP and we were able to come down and visit! So nice to see family so far from home! They brought Jaylia the cute sloth seen in this picture! He's been hanging out with her! 

As Jay's energy returned so did her fight 😂 which is great but exhausting in it's own way. Even vital checks she'd kick and refuse to cooperate. 

Even the pulse oximeter was deemed painful and weird and impossible to sleep with. 

We got through her check at 10pm and then she watched a movie.  She was pretty weepy as the night went on and I snuggled with her all night. She slept through her night time vitals, and we skipped her 2am Tylenol dose and waited to give her 6am till about 7:30. She's not complaining of pain so we opted for sleep rather than Tylenol. 

When she woke up Friday morning, we made a plan to wash her incision and apply the ointment, then go to the cafeteria for another smoothie. She absolutely hates wound care time, so a plan for afterwards is necessary. 

Today we went with her friend , C. C had the same surgery plus some the morning of Jaylia's surgery. It's been so encouraging to connect with another cranio family in person.  I'm incredibly thankful for her and everyone in the cranio world I've met that has helped us navigate this.  Please keep C in your prayers for healing too, it's been a rough couple of days for them. 

After smoothie time, it was drain removal time.  Because she has been so oppositional to any proding, we made the decision to give her a bit of oxy prior.  Child Life came in and helped explain the why of what we were doing next and helped distract during the procedure. Jay refused initially, but ended up leaning her head on my arm while I held her hair out of the way as they snipped the stitch holding it in and pulled it out. It went quick, and she fussed a bit, but overall went WAY better than it would have without the oxy to chill her out a bit. Fun fact, oxy gives her nausea too. But I'll take the exchange. 

Next is a CT scan, and IV removal. Depending on how quickly those things are accomplished we'll be discharged either tonight or tomorrow. 

Everyone here has been amazing, our nurse this morning advocated for us to have more time for Jay to adjust and get comfortable before attempting the removal. Dr. Taylor is so kind and I can't thank him enough for taking Jaylia's case seriously and checking her pressure and making sure she had the gold standard of care.  I am beyond thankful for the continued confirmation we made the right calls in looking elsewhere for care and coming here. 

Craniosynostosis is impactful to older kids, don't let anyone ever tell you it isn't.