5/21 evening edition

Good evening

Gonna keep this one kind of short as we both exhausted after an exciting morning and have been going non stop since he came into the world

He is still extubated and is doing great with the cpap, the respiratory team did take his mask off this afternoon and let us get some photos of him without anything on his face which we really appreciated! While the mask was off he didn’t have any complications and was doing great!

His potassium numbers are still really high so they are gonna give him some meds this afternoon and monitor very closely (hourly tests) till it is back in a normal range. He is also getting a steroid to help with his thyroid as of right now. There might be some issues with his thyroid that coincide with the apert syndrome.

I am attaching to links to the top 2 hospitals that work with apert syndrome with the best explanations and what to expect. Yes I know that Seattle Children’s is on here but if you google top apert hospitals these are the top two. There are considered 3 doctors that specialize in apert syndrome and two of them work at children’s which gave us a lot of relief.

https://www.seattlechildrens.org/conditions/apert-syndrome/

https://www.childrenshospital.org/conditions/apert-syndrome

If anyone wants more links or information children’s gave some more information today about it and great information.

I will try and attach some photos as well and thought they were going through on previous posts I apologize for that and will make sure they are uploading as well.

Have a great night warriors!

Walker, Brandi, Tyler

Comments

  1. Jeanette PetosaMay 23, 2025 at 6:48 AM

    I love the picture with you and Brandy and Tyler. What a precious family

    ReplyDelete

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