Moving again

Grace has been healing up incredibly well and as of my last update has actually been moved from the Neurology (5C) to General Pediatrics (7C).

Before we could make this move, however, a few things had to happen first. Her Monday labs came back good showing that there is no post op infection, praise the Lord! She was however, having a few drops in heart rate over the weekend, so an EKG was ordered. She also had to wear leads on her chest again to track her heart wave form. After four days everything for that has come back great as well! She still has them every so often but it is most likely related to the CSF drainage and nothing to do with her actual heart.

Speaking of drainage, the initial setting that was set by Grace's surgeon was bumped up to 2.0 as the setting of 1.5 was causing a bit of over drainage. Grace was presenting this over drainage clinically (irrationally, bratties, sunken fontanelle, etc) so it was adjusted. Since then those symptoms have subsided, except for the sunken fontanelle. Her nurse practitioner said that should resolve itself in time, we just need to give her brain time to adapt and settle.

This week she had multiple scans to confirm that everything is in order. An MRI on Sunday which I sat in to help keep her asleep/calm (those things are so loud). An X-Ray of shunt placement. An ultrasound of her brain (which showed improved ventricles and no brain sagging). There is so much to be thankful for! Grace's Neuro NP commented today how Grace has blown past all expectations for her and that she is excited to see how she continues to surprise everyone. This was a beautiful moment for me because it reminded me that tests and scans may say one things but God has the final say and he is in the business of working miracles 🙏🏼

Sleep and feed before MRI

Sam and I have been trained on wound care and will continue to do it on Grace's shunt incisions for 14 days. Other then that we will continue to monitor for infection and will have a follow up in 3 weeks where the shunt can be readjusted if need be. We also got to give her a real bath for the first time which was so amazing and Aunt Reba got to hold her too!

This move is the next big step for her in terms of coming home. Where is home exactly? Well that's a question for another day, and one only God can answer. We will trust that he knows best in that department as well. We are hoping to settle in Mississauga so we are close to SickKids for Grace's follow up care, Sam's work, and between our families. So if you have any leads or know of apartments or condos that are for rent please let us know!

Bottle feeding like a champ 😂

Prayer Requests:

• Continued healing from her shunt and ileostomy surgeries

• No internal or external shunt infection

• Good shunt pressure settings

• Continued oral feeds and weight gain

• Getting off of oxygen fully

• Sam and I as we start looking at next steps and finding a place to live (trusting the Lord to lead us in this department as well)