As always seems to be the case, much has transpired since last we spoke. It would seem as though I should update you all more often. Although, keeping you in suspense (or "suspenders" as Goofy would say) is so much more exciting.
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| "Oh hey, didn't see you there." |
Last time we talked Zeke was nearing decannulation (the removal of his trach). Sadly, just days before that process was supposed to be scheduled, he got sick. We were able to manage his symptoms at home for the first day or so, but come that Sunday afternoon, we could no longer keep his oxygen numbers high enough and had to take him in to the ER. He was admitted to the hospital with a respiratory infection called RSV. I paid close attention when those results came back so I can tell you that RSV stands for Respiratory Somethingsomething Virus. S-M-R-T! What that meant is that he had some inflammation in his lungs, and without the adequate reserve lung function to make up the difference, he needed support again. He ended up back on the ventilator and quite a lot of oxygen. There wasn't much we could do other than let the virus run its course. After 12 days in the hospital, his oxygen needs were finally low enough that would take him home.
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| Hospital oxygen just tastes sweeter |
While in the hospital, we had a care conference to talk about what this illness meant for his timeline. It was obvious that, at the very least, decannulation would need to be pushed back a couple of months. It was possible that he would need even longer to recover, which could potentially push everything back to next year, transplant included.
While we were distracted with all of that, Zeke was plotting. As part of his prime directive, he sent us into a worry spiral. While we were busy fretting, he was busy destroying the viral invaders. After a couple weeks at home, he was able to be weaned off the vent and has now been completely off for several weeks. He's doing so well that I think we're going to pull his trach out tomorrow. He doesn't need it anymore and Jenny and I have decided it's time.
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| Bubbles can be enjoyed with or without a trach |
Ok, fine, we didn't decide it was time, his doctor did! On Tuesday the 21st, Zeke is scheduled for decannulation! They'll have to scope his airway first, but as long as that all checks out, that trach comes out. This is such a huge landmark for him and his health... what else can I say, the dude is a rockstar!
This is all excellent news for transplant as well. With his bladder fixes on hold until after transplant, only the trach was standing in his way. If all goes well on Tuesday, he could get his new kidney in late July or early August! Where is he going to get a kidney from, you ask? Oh, haven't you heard?
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| "Hey, Aunt Michelle, look into my eyes. You are getting very sleepy. You will wake up in a tub of ice, missing a kidney. Do not be alarmed." |
I want to take this opportunity to thank everyone that got tested and those who offered to get tested. It means more than you know. Most of all, though, we have to thank Michelle. I've said it before and I'll definitely say it again: Getting a kidney will transform this boy's life. The constant nausea, the puking, the lack of energy, the discomfort, the dialysis: gone. How amazing is that? This truly is the greatest gift she could ever give to our son. In return, we'll give her... uhm, I don't, uh... Well, I guess we can make Zeke write her a card every year on her birthday, or maybe just a case of beer. Yeah, we got this.
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| You are a Jedi. Like your father before you, and his father before him. |
Caleb
