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| Notice anything? |
For those of you that may need more of a hint than just the above picture, Zeke is now spending time off of his vent! When last we talked, he had just started his weaning process and now we've reached the third stage. This time off the vent started last week with 15 minute intervals and has increased to nearly over 3 hours a day. We will continue to increase until he is off of the vent for all waking hours and then we'll start weaning his support while sleeping. Having him off his vent is just amazing. We finally get to hold our son without any tubes or cords getting in our way. We celebrated this occasion by running around this house with Zeke held high, superman style. We usually just camp in one room for the majority of the day since moving all of his equipment is time consuming, but no more! Now the world, or perhaps just our house, is his oyster. Along with this progress comes another first:
Wait for it...
During these times off the vent, Zeke can use a speaking valve! This is a one way valve that allows him to breathe in through the trach but forces him to exhale through his mouth and/or nose, allowing him to talk. He's been making little noises past his trach for a while now, but it's a lot of work to do it that way. With the speaking valve attached, he babbles away like a crazy little man. Hearing his voice is just awesome. For now he's just making random noises, but that's where we all start. Some of us barely ever make it past incoherent blathering by adult hood, so we're not too worried about him catching up.
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| Milo is creepin' |
Now, on to the kidneys... or in this case, the lack thereof. We have now taken a few steps towards transplant. Zeke had his first transplant evaluation about a month ago, which was an all day appointment that was largely informational. We met with lots of people to talk over the specifics of how this will all go down. Spoiler alert: It's going to be terrifying. The other thing that happened that day is Jenny and I were tested to see if we were a match with Ezekiel for kidney donation. Jenny and I both passed the first step, but sadly Ezekiel has some antibodies to some of Jenny's blood, which means she won't be able to donate this time around. That's alright though, she's already done so much for this kid and she doesn't really need another scar. Just a couple weeks ago I went on to the next step in transplant evaluation, a full day of tests. The thrust of this day was to give me a total work over to make sure that I'm healthy enough to give up a kidney and go through a major surgery. We also got another round of information, this time geared towards the donor instead of the recipient. We're still waiting on some of the results from that day, so we'll hopefully know more soon. If I pass this round, then there will just be one more round of tests as transplant gets closer to make sure everything is still on the up and up. If it all checks out, I've been told they'll scoop the kidney out with a giant ice cream scoop and duck tape it to Zeke's side... pretty sure that's how it works. As you can see, I was paying close attention during both transplant appointments. Top of the class!
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| Kidneys are not required for standing. |
Another thing that has come back into consideration is Ezekiel's bladder issues. His bladder was badly damaged at birth from the stress of being overloaded in utero. This is important because it doesn't make a ton of sense to plug a new kidney into a bladder that's incapable of doing its job. To that end they did a bladder ultrasound recently and discovered, though being no surprise to anyone, his bladder still looks to be in rough shape. They'll have to go in with a scope before they can be certain of the extent of the damage, and the results of that scope will determine what sort of treatment he will need. Apparently they can go as far as building him a new bladder using some of his small intestine! I've decided that the only way this could be possible would be with the use of black magic. On an unrelated note, I've started collecting goats. If you have any to sell I'll take them off your hands. I promise they'll be treated well... super well.
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| "I already did 50 push ups this morning, 51 is a running total." |
Other than those silly medical things, Zeke is doing awesome. His physical development seems to have kicked into high gear in the last few weeks. His newfound freedom from the vent has definitely helped. Without his vent circuit in his way, he'll roll across the living room and cruise through the kitchen in his walker. Before long, we won't be able to keep track of this little monster.
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| Movin' and a groovin' |
That's it for now! As they say in the biz, may the force be with you.
Caleb
