The Fall of a King

Oh, hi!

Can I help you?

So much has happened since our last update I'm not sure where to start. My fingers desire to type out all the events as they happened in hyper detail, but my brain just keeps screaming "TELL THEM! TELL THEM!"

"Tell us what?" I hear you ask. Oh, nothing much... Ezekiel is just coming home on Monday. "Wait, you mean in just a couple days?" Heck yeah, donkey!

Can you believe it? I only ask because I still don't. We just found out this past Tuesday that home nursing has fallen into place and that it is time for our family to finally settle into our life. We had been shooting for the 26th of March as a discharge date, but this had always been a hypothetical date that I was trying very hard to not focus on. Receiving a solid discharge date racked my brain with joy and panic. Those feelings have not subsided.

Chubs McGee

Since last we spoke Jenny and I had been doing all sorts of training sessions and gathering equipment and supplies, but that kicked into turbo mode with this week's news. Our basement has turned into a warehouse of medical supplies and continues to grow as we receive more deliveries. You think I exaggerate, but I do not. I've spent the last 3 nights taking inventory in my own house. I now unofficially moonlight as a warehouse supply manager for several home medical supply companies. 

As far as the little man, he's been doing great. Two weeks ago, Monday the 9th, Ezekiel was removed from his throne in the NICU and transferred to the general care unit. This was a milestone for him as that meant he was no longer in need of "critical" care. He handled it just fine, but his parents seemed to have a little difficulty with this transition. Zeke had been in the NICU for his entire life, it was impossible to imagine him in another unit. This was mostly because we had become selfishly attached to his nurses, doctors, therapists and all the staff in the NICU. These people were there for every monumental step in this boy's life. They saw both Jenny and I weep with joy, sadness and fear on multiple occasions. They had a front row seat to the most serious, emotionally charged months of our lives. Most importantly of all, they admitted a baby boy that was near death and were now sending him off as chubby, scowly, 13 pound hunk. How could we not feel close to these people?

Worth it!

As you can see in the picture above, being in a general care unit has its perks. Ezekiel finally got to meet a cousin! Children under the age of 15 are not allowed in the NICU, unless they are a sibling of a patient, so none of Ezekiel's cousins had been able to meet him.This picture symbolizes a culmination of sorts to me. Our families have been such a huge source of comfort and support during this time that I don't even have the words to thank them. They have bent over backwards to help us, accommodate us, and to just be there for us. Seeing little Stella's joy while holding Ezekiel's hand for the first time seems a fitting way to highlight why it's all worth it.

So here we are, just a couple days from discharge. This weekend both Jenny and I are doing our own 24 hour care sessions, which are exactly what they sound like. We will each be the primary care giver for Ezekiel for a 24 hour period to make sure we are aware of every aspect of his care. Jenny is actually in the middle of her session right now and mine starts in the morning. Wish us luck and I promise to share discharge pictures with you. I can only assume there will be a huge parade or some kind.

Thanks again for reading and for caring about Ezekiel!
Caleb