University of Minnesota Children's Masonic Hospital

We arrived at 2am by ambulance. After triage in the ER and stabilizing his blood sugars, we made it upstairs into an inpatient room by 6am! No sleep here!

Wednesday was a productive day, Easton got a new PICC line placed as his existing one had migrated back and wasn't in the optimal positioning. This was a sedated procedure but Easton, as always, was such a strong boy! I however, fell asleep while easting a muffin while he was in his procedure. Yes, WHILE eating a muffin. Poppy seed if you were wondering :) He also got back on his TPN so he was getting nutrition. we had to go and pick up Easton's medical records by hand (thanks momma!) from Children's Minneapolis as it was too much for them to fax over. Our wonderful tram here combed through all of those records piece by piece.

Our team decided that he was on too many medications to tell what was helping. So, we have tapered off almost all of those. We also did a contrast enema, which I will spare you the details of, to rule out issues of the colon and large intestine. This came back normal and I have changed about 100 diapers today it feels like. Maybe more. All day Easton has been tired and lethargic and fairly crabby, although his new giraffe stuffed animal, which still needs a name, got the few giggles of the day!

However, our newest development tonight is a bit scarier. Easton has been having some suspicious activity. The first episode involved breath holding, body clenching and spasms, and rapid blinking. Now, he is hooked up to heartrate and pulse ox monitors and is having extremely high, spiking heartrates that last around a minute or two before returning to normal. As high as 227 BPM. Through all of this he has been sleeping. His pupils are dilating well now, but after episodes it is a little delayed. Overall, he is living up to his mystery kid name! We are waiting on a Neurology consult as well as the Cardiac Team to do an evaluation.

While all of this is scary, Easton has shown great, reassuring signs. I will update as soon as I know more tomorrow!

THANK YOU for all the support, prayers, and messages. We truly are blessed to have such an amazing support system through all of this!