If any of you are on Facebook, I assume you're aware of the fact that Ezekiel is home and we like to post pictures of his cuteness. To those who are annoyed by people posting pictures of their "stupid" kids, I would apologize, but it wouldn't be sincere. As a peace offering, please enjoy another picture of my spawn.
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| Boom |
Since it's been a whole month since we've had an update, let's rewind the clock to when we spoke last: the day before discharge. I'll set the scene. Our young hero is just a few days shy of being 5 months old as his hospital stay draws to a close (significantly ahead of the projected 6 - 7 month stay). Jenny and I both just finished our 24 hour care sessions with no major incidents and only small amounts of vomit and other baby fluids on our clothes. On Sunday, the day before discharge, we made a flying trip to Boscobel, where my parents live, for a baby shower with my side of the family. This may seem like pointless exposition, but I bring it up for a couple of really good reasons. Number one:
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| Have you ever seen a cake this awesome? |
Number two: On our way back, it started to snow pretty heavily. Ezekiel's streak continues! Clearly, we should have planned for this since it was a big day for him. We made it slowly and safely back to Madison in plenty of time to complete Ezekiel's first road trip. It was a little panic inducing to take him out of the hospital for the first time, but he seemed to be quite content riding in the car. He was wide eyed, soaking everything in the entire time.
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| So many new things to see! |
That night, it snowed again. For those who forgot, it snowed the morning Jenny went into labor, it seemed quite appropriate that it would snow the morning we finally brought the little man home 5 months later. Yay Wisconsin!
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| The view from Zeke's room the morning of discharge |
Discharge day required a little more waiting around than I expected, there were just lots of things that needed to happen in the proper order. I thought they were just dragging their feet so they would have more time to get all the floats lined up in the proper order for Zeke's parade. Sadly, I didn't see any floats on the way out of the hospital and have since written a strongly worded email to hospital management expressing my displeasure. They have yet to respond.
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| We made sure to stop by the NICU to give Zeke's former subjects one last chance to honor him |
Our first week at home was crazy. We had just gotten him out of the car when the home nursing people arrived with lots of paperwork to go over. The next days were filled with appointments, home visits and countless phone calls to and from clinics, equipment providers, insurance and whatever else. That has slowed down a little, but all of those things are just part of our life now.
So here we are, a whole month later. There have been plenty of firsts and awesome experiences. We may sleep a little less, but we are ecstatic to have our little boy at home. We have also completely changed our stance on night nursing and now think that it is the most wonderful thing a young lad could have. We have a night nurse for two nights a week, and we look forward to those nights like a teenage girl looks forward to prom.
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| Please love me! |
How is Zeke doing? He's doing great! As of yesterday he's a whopping 6 months old and he is a happy, smiley, chubby boy. I know, describing him as smiley still feels weird, but he is indeed smiley. The boy with the permanent scowl is no more, they must have swapped the kids at some point without our knowledge. He has pretty frequent appointments for the different areas of his health so they're keeping pretty close tabs on him. It's hard to measure specific points of progress currently, so I can't list any landmark improvements right now. But he gets stronger every day. For now, that's enough.
I've had a lot of people ask me when he's getting his trach out. Many of you may be wondering the same thing, I know I am! There is no way of knowing when, or if, that will happen. The doctors have said they think he'll be able to grow out of the trach, but there are no guarantees. He's doing really well, but don't forget that his trach is largely responsible for why he's doing so well. Weening him off it will be a very slow process, so it is here to stay for the foreseeable future. The timing of all this will also affect when he will be eligible for a kidney transplant. 18-24 months is the youngest they will transplant someone, but they don't like to transplant kids with trachs. That means that if he's still trached when that time comes, it could push his transplant back. So there you have it, I just used a whole lot of words to say "We have no idea what's happening."
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| Carry on, carry on. |
That's all for now, thanks for reading!
Caleb
