The 8am MRI was bumped to the afternoon.  We were disappointed not to get answers early, but the delay gave us more time to discuss our plan.  We made a big decision to have him transferred to Lurie Children’s Hospital of Chicago via air.   Discharge is not possible, and ground is too far.  We feel that it is best to be home with our network, a place to have our parents stay, and most importantly a care team to which we have connections.  We aren’t clear on timing, but only one parent can fly with him.  We made the decision, along with the intensivist, to have the MRI done at Lurie for simplicity. We are anxious to be in Chicago and are hopeful it could be today. We will share more this afternoon.

After writing the above, we got a call that Lurie will not accept our transfer.  We are disappointed to say the least.  We were told the MRI would begin around 2pm.  He started being moved to MRI at 2:15, but the MRI didn’t start until 3:30.  Alexander has been sleeping so hard.  He is chronically sleep-deprived from often waking up in the middle of the nights.  While he rested, we worked on other plans to be transferred close to family in Nashville or Atlanta.  Thanks to an incredible friends, colleagues, former classmates, and physicians, we may be getting close to being at Vanderbilt or CHOA.  It would be so good to finally be making progress with incredible surgeons and close to our people as well.  We hope to know more tomorrow.

Alexander did get a happy treat in the form of a smile bucket today (“Buckets of Smiles”). He actually smiled and especially had fun playing with the Paw Patrol toy.  The staff here at Ascension Sacred Heart Pensacola has been very kind.

After 22 hours of being NPO, we asked Alexander what he wanted to eat.  He didn’t really say much so we asked if we could guess.  We said, “macaroni and cheese” to which he replied a huge Alexander grin while nodding his head.  Christy is off to find some mac and the Fun Dip that he has been asking about for two days! We are so anxious to discuss the MRI with the neurosurgeon, but we don’t expect to have all the answers we want until tomorrow.  Christy is on fumes from staying with Alexander and resting only about 3 hours due to nightmares. She plans to rest after Alexander returns from his MRI and is settled.  We guess that will be around 9pm.