5/20 evening update

Good Evening

Thought I would do this update a little earlier and as I am still in the nicu. Walker had a very busy but enjoyable day. He got a lot of snuggle time today! Curt (my dad) traveled up here to be with us got here on Sunday and had him semi quarantine before he got to see his grandson and came in today. So he had one of his first visitors.

What happened after the first update today:

He got a bath from us while in his bed, cardiologist came in and said his SVT episodes are not uncommon or they aren’t really worried about him and just upped his meds for that a little to see if that will help, that being said he did have 5 episodes of it today the longest one being 3 minutes shortest being 10 seconds. Cranial facial stopped by and get us a heads up on what there thoughts are for procedures in about a year they will want to do. And then the genetics team did stop in and gave us preliminary results of the genetic sequencing test they started last week. They have been able to confirm that Walker does suffer from APERT syndrome. They haven’t made it final but that’s the preliminary results. I can go in depth on here at a later time of what the syndrome consists of but at this point in time we are still trying to process it and want to get the information from the doctors in coming days and give you the correct information for him. We have noticed that he isn’t on the major severity of it more of the mild side.

With the sad news I have some good news and want to share that with you so this gets better at the end of the update. ENT has decided that tomorrow after his echo that cardio wanted we are going to attempt a extubation and see how he does on his own without a surgery since his nose does have some openings! Great news! They will leave his feeding tube and probably have to use a cpap nose device on him for a little while longer but we are excited that his lungs and nose have gotten so much better that they want to do this!

He did get about 4 hours of snuggles today with his papa curt, Brandi and myself. He is more awake and has been opening his eyes a lot more today as well. Today was a great day again. We know there is a lot of information in this one and take your time as we are well.

Thank you all again for your support, thoughts, and prayers. Tomorrow will be walkers biggest milestone so of course we are very excited.

Love you all

Walker, Brandi, Tyler

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