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

Birth to kingship

Greetings and salutations!

"My fist tastes like justice!"

Since the last time I shared details of our young hero's awesomeness, he has been crowned King of the NICU and has chosen the boppy as his throne. He has earned this title by being the biggest baby in the NICU, cornering the market on Desitin, and easily defeating all who opposed him in open battle. You may now refer to him using any of the following honorary titles: His Royal Diaperness, The All Seeing Scowl, Grand-master Granuloma, Colonel Sausage Arms, or Darth Zeke: Plague of the Premature. I've asked him which of these honorary titles he prefers, but he simply stares in quiet reflection. The stresses of rulership weigh heavily on his chubby little shoulders.

His justice is swift, but fair

His first royal decree was that he should be on his very own home ventilator. After all, a King cannot be seen as weak in the eyes of his subjects! He's been on the home vent since Wednesday of last week and hasn't had any issues with it. They've even begun weaning some of his settings as he tolerates it.

We had another care conference last week, the focus of which was Ezekiel's path to discharge. At this point, he's almost medically ready to go home. There are a still few other things standing in his way, however. Jenny and I need to finish all of our training, we need to procure all of his home equipment, and we still need home nursing. We've made some progress on all these fronts, but there is still more to be done. The home nursing situation may very well be the one piece that takes the longest to sort out. We've had a home nursing company on the case for a couple months now, but that won't stop me from adding a shameless plug here. It seems that an overnight nurse is the hardest to find, so if you're a nurse and interesting in chilling with a sleeping baby a couple nights a week, let me know!

He's in a bulk phase

I must admit, I first thought a night nurse was unnecessary. I figured that all new parents have to get up in the middle of the night with their kids, why should I expect someone else to do it for me? Sadly, it's not quite as simple as that. Something happened last week that highlighted why this piece of the puzzle is an important one. On Monday, Zeke's trach either became blocked or was dislodged and he couldn't breathe. His oxygen saturation and heart rate dropped quickly. Jenny was in his room at the time and rushed to get Zeke's nurse, who was already responding to his alarms. Even with that immediate response, Ezekiel stopped breathing and his heart rate got dangerously low before they got his trach switched and started giving him manual breaths. They had even called for the code cart, which is a cart with all the supplies needed to resuscitate someone who's life is in danger. The worst was avoided, thankfully, but only because of the quick response from the medical team. If something similar happens when he's at home, we will need to respond just as quickly. We've been trained to do all the things that they did to bring him back, but training and execution are two different things, especially if you've just been awoken from dreamland. I feel pretty good about our ability to respond to a situation like that, Jenny is a respiratory therapist after all, but someone who is awake and already at his beside could make all the difference.

Mama bear and her cub

But let's not get down, things are progressing wonderfully. The All Seeing Scowl is a whopping 4 months old and still exceeding expectations. Jenny and I cannot wait to have our whole family at home. And who knows, maybe we'll even get our dog back at some point... maybe.

Until next time!
Caleb