Not as Planned

July 29 2022

There was a small blood clot that made its way to Ezekiel's brain. Zeke was not greatly affected although they don't know for sure until the stroke team sees him. Neurology cleared him but we've been transferred to cardiology so we are not going home as planned. He is still on oxygen which he needs to be off to go home.

He had retained a lot of fluid from the iv fluids given and so they administered a high dose of a diuretic to help flush the fluid and take the pressure off his heart. Unfortunately this has caused him to be dry, he has tachycardia and isn't feeding well. And to counteract the being dry he needs to feed but he won't because he is tired. So I 've been working with nurses to get him back to his room, he had been moved out to a shared room with other kids and it was noisy and he was not sleeping well at all. God has been so kind to place a team of nurses with us who are willing to accommodate some of the requests we've made to help Zeke get back on track. Very grateful for this.

The team has discussed his case and will give us a proper review of their findings and the next steps for the type of surgery they advice in three weeks. They are also preparing to send Ezekiel's results to Boston Children's for the second opinion we requested and will wait to hear what they suggest. We continue to thank God for a medical team that desires to see Zeke get the best possible surgery that will help repair his heart. They understand the complexity of his heart and are willing to get advice from other cardiac teams. Thank you all for your prayers and continued support. Our family is ever so grateful!

We are so humbled by the love and support God's saints have showed us.

1 John 4:19 "We love because he first loved us"