I was trying to come up with a witty way to start this post but nothing was coming to mind. I mentioned this to my wife and she was quick to offer quite a few theories as to why this may be the case. I'm not going to share any of those with you though, mainly because every single one of them was quite hurtful. So instead, I'll focus on the positive which is, of course, this little bundle of tubes.
Since last we spoke Ezekiel has continued his torrid relationship with his breathing tube. He had his tube replaced on new years eve (shortly after the above picture). He was simply struggling too hard to breathe and his struggle was worsening. They wanted to replace his tube under controlled circumstances instead of waiting until his need became emergent. It was definitely the right call because once his tube was back, he started breathing easier. The only downside is that he gags on the tube, causing him to spit up. Spitting up all his feeds makes gaining weight more than a little tricky. Also, with that tube back in place, the talks of a tracheotomy began anew. Zeke didn't like all this talk, nor did he enjoy all this puking, so he took action. Even with his hands bound in adorable socks, he finds ways to get into mischief... this doesn't bode well for Jenny and I in the future. On the 7th, while he was being weighed, he was able to crane his neck back far enough to pop his tube out. All the medical tape the nurses stick to him cannot compete with his desire to be free of that troublesome tube. As of today he is still free of his tube and lovin' it, McDonald's style.
Before all of that though, something else happened: this little boy turned 2 months! To celebrate they put clothes on him for the first time. It's like he's a real boy!
Another milestone he achieved is that he's now on his dialysis cycler. This cycler that now handles his fluid fills and drains is the same machine that he'll go home on. He's not to his full fill volume just yet, but we get closer every day.
His dialysis is going pretty well, but there have been a few hickups along the way. Keeping Ezekiel's hydration at a healthy level is a very delicate balancing act. We've gone back and forth between water overload and dehydration a few times. Part of this is because he's so small that there isn't much wiggle room. The other factor is that his dialysis goal is an ever moving target. It's been a bit of a roller coaster, with one case of dehydration that got pretty serious. Ezekiel actually began to go into hypovolemic shock, which means his body wasn't able to get blood to all the proper places. Thankfully the NICU team acted before things got insane, but it took several days for his blood pressure and heart rates to recover.
In this middle of his dehydration crisis, they found out that his broviac catheter (which was his main IV site through which they deliver his medications and what not) was no longer delivering his fluids to the proper place and needed to be pulled. This left them in an emergency situation with no quick way to administer IV fluids. For short term access they decided to put an IV in his scalp! This looked as terrible as you might imagine, but Zeke didn't really seem to mind and it served him well. Since those types of lines don't last very long, he had to have another procedure to install a more permanent IV site. He now has this more permanent (and stable!) site in his right leg.
Other random fun facts: Ezekiel now has a hernia thanks to the dialysis. We've been told this is pretty typical because of all the strain dialysis puts on the abdominal wall. He now follows his Grandpa, Dad and Uncle Micah in the great Zart tradition of having a hernia. Some families have the coolest legacies. We also found out that he technically does NOT have clubbed feet. They still look like clubbed feet, but they're more flexible than real clubbed feet, I guess. This doesn't really change the plan for fixing them however, it's just a technicality. He'll still need therapy and perhaps braces.
Just today we had another care conference and we all came out of that meeting with the plan to proceed with a tracheotomy. "But wait!" I hear you exclaim, "I thought you said he was rocking it like a hurricane without his breathing tube?!" That's true, I did say just that, but there are a lot of factors at play here. One of the more important ones is that even though Zeke's stats look good without his tube in, he's consistently breathing very quickly to achieve those good stats. Healthy babies breathe around 30 times a minute. Zeke breathes between 80 and 100 times a minute. So even though he's keeping it up for now, he can't sustain this in the long term. He's also burning a ton of calories with his breathing that should rather be spent growing. That coupled with a few other boring factors make a trach the best option for him. Zeke is scheduled to have his tracheotomy tomorrow morning at 7:30 AM. Wish him luck and I'll be sure to let you all know how it goes!
Until tomorrow!
Caleb
 |
| Happy New Year from the NICU! |
Since last we spoke Ezekiel has continued his torrid relationship with his breathing tube. He had his tube replaced on new years eve (shortly after the above picture). He was simply struggling too hard to breathe and his struggle was worsening. They wanted to replace his tube under controlled circumstances instead of waiting until his need became emergent. It was definitely the right call because once his tube was back, he started breathing easier. The only downside is that he gags on the tube, causing him to spit up. Spitting up all his feeds makes gaining weight more than a little tricky. Also, with that tube back in place, the talks of a tracheotomy began anew. Zeke didn't like all this talk, nor did he enjoy all this puking, so he took action. Even with his hands bound in adorable socks, he finds ways to get into mischief... this doesn't bode well for Jenny and I in the future. On the 7th, while he was being weighed, he was able to crane his neck back far enough to pop his tube out. All the medical tape the nurses stick to him cannot compete with his desire to be free of that troublesome tube. As of today he is still free of his tube and lovin' it, McDonald's style.
Before all of that though, something else happened: this little boy turned 2 months! To celebrate they put clothes on him for the first time. It's like he's a real boy!
 |
| He's collected a few new fluffy Star Wars friends |
Another milestone he achieved is that he's now on his dialysis cycler. This cycler that now handles his fluid fills and drains is the same machine that he'll go home on. He's not to his full fill volume just yet, but we get closer every day.
His dialysis is going pretty well, but there have been a few hickups along the way. Keeping Ezekiel's hydration at a healthy level is a very delicate balancing act. We've gone back and forth between water overload and dehydration a few times. Part of this is because he's so small that there isn't much wiggle room. The other factor is that his dialysis goal is an ever moving target. It's been a bit of a roller coaster, with one case of dehydration that got pretty serious. Ezekiel actually began to go into hypovolemic shock, which means his body wasn't able to get blood to all the proper places. Thankfully the NICU team acted before things got insane, but it took several days for his blood pressure and heart rates to recover.
 |
| Jedi Master Ezekiel is wise beyond his years |
In this middle of his dehydration crisis, they found out that his broviac catheter (which was his main IV site through which they deliver his medications and what not) was no longer delivering his fluids to the proper place and needed to be pulled. This left them in an emergency situation with no quick way to administer IV fluids. For short term access they decided to put an IV in his scalp! This looked as terrible as you might imagine, but Zeke didn't really seem to mind and it served him well. Since those types of lines don't last very long, he had to have another procedure to install a more permanent IV site. He now has this more permanent (and stable!) site in his right leg.
Other random fun facts: Ezekiel now has a hernia thanks to the dialysis. We've been told this is pretty typical because of all the strain dialysis puts on the abdominal wall. He now follows his Grandpa, Dad and Uncle Micah in the great Zart tradition of having a hernia. Some families have the coolest legacies. We also found out that he technically does NOT have clubbed feet. They still look like clubbed feet, but they're more flexible than real clubbed feet, I guess. This doesn't really change the plan for fixing them however, it's just a technicality. He'll still need therapy and perhaps braces.
 |
| Let me think... Why yes, I am totes adorbs! (This is how the kids talk these days) |
Just today we had another care conference and we all came out of that meeting with the plan to proceed with a tracheotomy. "But wait!" I hear you exclaim, "I thought you said he was rocking it like a hurricane without his breathing tube?!" That's true, I did say just that, but there are a lot of factors at play here. One of the more important ones is that even though Zeke's stats look good without his tube in, he's consistently breathing very quickly to achieve those good stats. Healthy babies breathe around 30 times a minute. Zeke breathes between 80 and 100 times a minute. So even though he's keeping it up for now, he can't sustain this in the long term. He's also burning a ton of calories with his breathing that should rather be spent growing. That coupled with a few other boring factors make a trach the best option for him. Zeke is scheduled to have his tracheotomy tomorrow morning at 7:30 AM. Wish him luck and I'll be sure to let you all know how it goes!
Until tomorrow!
Caleb
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