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| Enjoying his first beer, that's what |
It's been a good long while since our last update, for which I apologize. I wanted to make sure I had something more interesting than new teeth and nights full of baby vomit to share with you, and now I have just that. Since Ezekiel's respiratory status is driving this ship, let's start there.
A few weeks ago, we started the weaning process. We were waiting for him to be able to sit up on his own, and now he finally can. At first, this entails simply changing the respiratory rate on his ventilator. His vent does two things for him currently: it provides breaths from start to finish needing no input from him whatsoever, and it also supports any breaths he takes on his own. The first step of the weaning process is to slowly reduce the number of breaths that the vent gives him, forcing him to initiate more breaths on his own. That number has dropped a couple times and will continue to drop as he tolerates it. So far, he has handled the wean pretty well. Once we get to spot where Zeke is initiating all of his breaths without issue, we can start trials off of the ventilator. This is exactly what it sounds like, we'll actually detach him from the vent for very short periods of time. This is a landmark step in his development. Don't forget, this boy has never breathed without support in his life (save for the quick periods when he's detached for trach changes and what not). If he does well, the time he spends off the vent every day will slowly increase until he is free of the vent all together. Zeke's primary lung doctor feels that if all goes well, he could be free of his trach and vent as soon as next summer! This would obviously be best case, but it's very exciting to be working toward this goal.
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| The "Little Chief" trying on his Great Grandfather's Fireman's Helmet |
This timeline also affects the timing of his transplant. I mentioned this before, but just as a quick reminder, he needs to be trach free before he can get his kidney transplant. So, if his trach comes out in the aforementioned timeline, he could potentially get his kidney next summer/fall! The transplant process is rather lengthy so it's kicking off soon, we have our very first appointment at the transplant clinic later this month. This is a long (4-6 hour) informational appointment where we will get the low down on all the steps to come.
If all of these things go well, he could free of all of his tubes as soon as fall of next year! That's obviously a little hard for us to picture, but man will that be awesome. With a new kidney, he'll finally have more normal energy levels and be free of the constant puking. It'll be like meeting him for the first time all over again.
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| "Hug me while I drive." |
Now that we have the big things out of the way, I'll throw down some more details if you care to continue to read about our offspring. The little monster has a few teeth now and likes to show them off. He still gets weekly physical and speech therapy. His physical development is coming along slowly, but they're pretty pleased with his progress. He's definitely behind, which can be a little tough to deal with, but the fact that he's making progress is the more important part. His speech development has hit more a snag, sadly. He was eating orally pretty well for a while, but a few weeks ago he stopped taking anything by mouth. Nobody is really sure exactly why this happened, but apparently this isn't terribly uncommon with kids who have had an oral aversion.
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| 3-0, baby! |
Lastly, I have an exciting story that relates to Ezekiel's prime directive: my ulcer. He normally gives us plenty of reasons to overreact and obsess about relatively minor issues, but about a month ago he decided to step up his game. The story starts in the middle of the night, as all good stories do. Zeke was having a rough night. Rather frequent retching and puking are a nightly occurrence for the little fella, but this night was especially bad. Jenny and I take turns sleeping in his room on the nights we do not have nursing and we had just made our 4AM switcheroo. Neither Jenny nor Ezekiel had slept for the first half of the night due to Zeke's obvious discomfort. Minutes after I took over, Zeke began retching again and what he produced advanced his prime directive by a few weeks: blood. The poor little guy had a bloody puke, followed shortly by another, much larger, one. I woke Jenny since she had been sleeping for all of 5 minutes (lazy!), and we rushed to the ER. He had another bloody puke in the car, but once we got the ER, it had stopped. They quickly ruled out some rather serious possibilities that can cause bloody vomit, but wanted to admit him given his complicated medical history. He spent a full 24 hours in the hospital and in the end, they assumed his feeding tube had caused a laceration in his stomach that had since closed. He apparently just wanted to spend a day with his old friends back at the Children's Hospital. All in all, he got a couple new meds to help prevent it from happening again and they sent us on our merry way the next morning.
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| Puking blood ain't no thang! |
Today Ezekiel is 11 month's old, so I leave you with a picture from his mother's birthday a few weeks ago.
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| "I got you this card, and these magical flaming cupcakes!" |
Until next time!
Caleb
