This entry says it's a year in the making because on the 23rd, Ezekiel will have been home for one whole year. As is normal for any child his age, many things have changed in a year. Behold:
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| Where once there was chunk... |
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| ... now there is hawk |
Since the last time we talked about Big Baby Z, many things have happened. He had just started spending time off the ventilator and now he's off around the clock. Once he progressed to being off all day, he had a sleep study done at the hospital and was cleared to be off at night as well. He now sleeps with just some heat and humidity delivered via a trach mask to help keep his mucus from getting thick and blocking his airway. He still needs a little oxygen at night, but that shouldn't keep us from progressing to the next steps. What is the next step, you ask? Why, getting that trach out, of course! Assuming there are no hiccups, they're hoping to pull his trach in late April. They'll go in with a scope to check out his airway, and if that all looks good, out it comes! How awesome will that be?! This will have such a significant impact on our daily lives I'm not even sure where to start. We will finally be able to have babysitters that aren't specifically trained on how to manage a trach, or more simply stated: family. We've decided to hold our very own Hunger Games to see who gets him first. All the trach related equipment will be no more, allowing us to move about the house more freely and travel without loading the car down with emergency supplies. Oh, and the obvious upside to his overall health and well being, can't forget that one.
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| "Reveal your secrets to me, you blasted contraption!" |
I mentioned last time that he might need some help with the bladder, and that has since been confirmed. He went in for some tests and those showed how bad his bladder really is. The excessive swelling in utero caused the bladder wall the scar and the lack of use since has caused the entire bladder to shrivel. There has been talk of a surgery that would use Ezekiel's own ureters to expand the bladder, but that specific procedure is still being debated. What we do know, is that his bladder needs some help, the exact help is still TBD.
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| He got some on the paper... 20% would be a generous estimate |
On to the biggest, baddest piece of them all... the kidney. This drama on the kidney front has continued unabated. I have since been removed from the donor pool and Jenny is back in as a last resort. My brother Micah and cousin Adam were in, then out, and now might be back in (or out). Jenny's sister, Michelle, is currently the next one up to bat for her all day evaluation. These are just the highlights of all our kidney drama. There have been canceled evaluations, evaluations that were cut short, and someone has been playing dosey doe with our donor order. It could be any one of these people, or maybe none of them, who knows. Whatever the outcome, Jenny, Zeke and I will be eternally grateful to them for their willingness to go through so much for one so little. The generosity of this act cannot be overstated, so no matter how many kudos I give them in person or on the world wide web, it will never be enough. Getting a kidney will transform this boy's life and for that, we cannot wait.
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| Catch! |
That's probably enough sap for now. As my main man Yoda would say, "Judge me by my size, do you?"
Caleb
