9:27pm update:
Job is in the 90s/high 60s and weaning down on his epi steadily. Yay! Yay! Yay! They also came down on his pacing to a heart rate of 170. They'll continue to go down on both all night and once his epi is under control they'll wean down on his other two vasopressers.
7:19pm update:
Job's blood pressures are the best they have been alllllllll day. I'm so excited! For the last hour they've been in the 80s/60s, so we just went down on his vasopressers.
5:40pm update:
Pacing.
Paralyzing
Sedating
That's been the goal for the last little while and it sounds like it will be the goal through the night. Bascially, they're trying to taking everything out of his hands so he can recover from the trauma of transplant surgery and from his extravastion this morning and his ongoing rhythm issues.
The electrophysiologis (EP) is concerned that Job could get into something called "jet rhythm," which would be a hard rhythm to get out of, so they started pacing him again so as to prevent Job from even getting there.
Tomorrow they will look for opportunities to check on his intrinsic HR and find out what it is, because right now the pacer is hiding his intrinsic HR.
When they paralyze him, he's fully on the ventilator and he can't initiate his own breaths. They want to make sure he's fully sedated when paralyzed so that he doesn't wake up unable to move and get scared.
3:40pm update:
Job's echo looks pretty good in terms of heart function. The right ventricle is slowly waking up. It's so odd that he now has a left ventricle working hard, doing what it's supposed to do! And that it's his right ventricle struggling!?! (Not that his native left ventricle could ever work at all because it was just a tiny little flap of skin.) I'm just still in awe that he has a four chambered heart.
And I guess I'm clinging to that awe because it's been a rough few hours again. This time because his rhythm issues are back. We've never had rhythm issues before, so this is a whole new field. The electrophysiology team has been in his room a lot today but they've been monitoring closely even when not in the room.
There really hasn't been any sort of break in the action because the few minutes in between the stream of specialists checking in, or in between evens, are dedicated to regular cares like turning him in the bed so he doesn't get bed sores or checking his lines and wounds or putting chapstick on him and swabbing out his mouth.
1:25pm update:
Job is ok now but that was a rough couple hours.
The intravenous line (IJ) going through his jugular pulled out of his heart and the calcium and blood pressure meds he was receiving through that line poured into the skin tissues on his neck. They're toxic for skin and so his neck swelled and his blood pressure dropped dangerously low.
Within a few minutes there were about 20 people in his room and they quickly began surgery to remove his bad IJ line on the right side of his neck and place a new IJ line on the left side of his neck.
It was critical to stabilize his blood pressure and to get quick access because without access Job can't receive the meds he needs.
That the line pulled out and leaked these medications is called an extravasion. Essentially, his neck got poisoned and the concern is that this will cause cell death at the site, which would mean he will have a great deal of discomfort and disfigurement there on his neck.
I took this photo probably two hours after the worst of the swelling (caused by the saline + meds leaking into his skin), so it doesn't show how puffy he got, but it will give you an idea:
Three new teams (Venous, Wound Care and Plastic Surgery) are now following him to monitor this wound and between the three of them they're hopeful that, in fact, the medications were diluted enough because of the saline fluid he was also getting. Whether the calcium will build up and create hard deposits that will need to be broken up later is perhaps the most serious issue? And it could mean he would need plastic surgery on his neck in a few months and/or have a big black spot on his neck.
Besides the poisoning, he wasn't getting necessary meds to his heart and so that could have been a big factor in why he was so uncomfortable and why he was all over the place. The thought is that normal post-op swelling began to pull the line out and then when Job was jerking and thrashing about this morning, he yanked it out the rest of the way.
It probably also set us back a day in terms of moving forward. He wasn't actually stable "just" recovering from yesterday anyway, but because of this issue they needed to slow way down and just paralyze him again so he could begin to recover.
Next echo comes to assess the function of his heart.
10:06am update:
It's been a rough morning emotionally because they lifted Job's paralysis meds and so he's been able to move... but that means we've been physically restraining Job as he flails and writhes and screams. Except his scream is soundless because he's intubated.
We just got kicked out of the room so they can do this little surgery to place new lines (which he needs for access and meds). Once he has stable line access then they are going to work to getting him off the ventilator. The tube he has in his mouth for that is really uncomfortable and he hates it and that's probably the biggest source of his irritability.
I didn't get a good picture but there are about 20 people his room right now. His intravenous jugular (IJ) line in his neck was about to blow and it got pretty intense, there were rushing to get the PICC established.
He's pretty out of it but the issue is that they need him to wake up so they can extubate. But when he wakes up he's hurting/scared/mad. So then his numbers plummet and he moves too much. We can't get him comfortable.
Once he gets these new lines then we can work towards extubation. Which will help his comfort. And a big relief is his rhythm is better. They were pretty worried last night because it was so messed up.
9:30am update:
The surgery went well, but we are in a 48-72 hour period that is very turbulent.
Right now Job is having a lot of heart rate/rhythm/pressure issues, which isn't out of the ordinary for someone getting used to a new heart.
And as he slowly shakes off his sedation, he is obviously very uncomfortable. Goes back and forth between sleeping and silently thrashing around when awake. He wants to scream but he can't because of intubation.
Right now they have Job on an external pace maker to control his rhythm.
He came out of surgery with a pretty significant fever, which contributed to his high heart rate (~210). His fever is under control now, and his heart rate is down (they are pacing him at 150).
Also contributing to his high heart rate is that his new heart is smaller than his old one. In particular, his right ventricle is smaller and quite stiff right now. Needs time to adjust to being in a new body.
When Job falls asleep, his blood pressure goes down to a level lower than desired, so they've given him fluids and other medical therapy to manage his blood pressure.
Job's discomfort and fear are things we'll be dealing with all day and probably through the weekend.
Pacing.
Paralyzing
Sedating
That's been the goal for the last little while and it sounds like it will be the goal through the night. Bascially, they're trying to taking everything out of his hands so he can recover from the trauma of transplant surgery and from his extravastion this morning and his ongoing rhythm issues.
The electrophysiologis (EP) is concerned that Job could get into something called "jet rhythm," which would be a hard rhythm to get out of, so they started pacing him again so as to prevent Job from even getting there.
Tomorrow they will look for opportunities to check on his intrinsic HR and find out what it is, because right now the pacer is hiding his intrinsic HR.
When they paralyze him, he's fully on the ventilator and he can't initiate his own breaths. They want to make sure he's fully sedated when paralyzed so that he doesn't wake up unable to move and get scared.
3:40pm update:
Job's echo looks pretty good in terms of heart function. The right ventricle is slowly waking up. It's so odd that he now has a left ventricle working hard, doing what it's supposed to do! And that it's his right ventricle struggling!?! (Not that his native left ventricle could ever work at all because it was just a tiny little flap of skin.) I'm just still in awe that he has a four chambered heart.
And I guess I'm clinging to that awe because it's been a rough few hours again. This time because his rhythm issues are back. We've never had rhythm issues before, so this is a whole new field. The electrophysiology team has been in his room a lot today but they've been monitoring closely even when not in the room.
There really hasn't been any sort of break in the action because the few minutes in between the stream of specialists checking in, or in between evens, are dedicated to regular cares like turning him in the bed so he doesn't get bed sores or checking his lines and wounds or putting chapstick on him and swabbing out his mouth.
1:25pm update:
Job is ok now but that was a rough couple hours.
The intravenous line (IJ) going through his jugular pulled out of his heart and the calcium and blood pressure meds he was receiving through that line poured into the skin tissues on his neck. They're toxic for skin and so his neck swelled and his blood pressure dropped dangerously low.
Within a few minutes there were about 20 people in his room and they quickly began surgery to remove his bad IJ line on the right side of his neck and place a new IJ line on the left side of his neck.
It was critical to stabilize his blood pressure and to get quick access because without access Job can't receive the meds he needs.
That the line pulled out and leaked these medications is called an extravasion. Essentially, his neck got poisoned and the concern is that this will cause cell death at the site, which would mean he will have a great deal of discomfort and disfigurement there on his neck.
I took this photo probably two hours after the worst of the swelling (caused by the saline + meds leaking into his skin), so it doesn't show how puffy he got, but it will give you an idea:
Three new teams (Venous, Wound Care and Plastic Surgery) are now following him to monitor this wound and between the three of them they're hopeful that, in fact, the medications were diluted enough because of the saline fluid he was also getting. Whether the calcium will build up and create hard deposits that will need to be broken up later is perhaps the most serious issue? And it could mean he would need plastic surgery on his neck in a few months and/or have a big black spot on his neck.
Besides the poisoning, he wasn't getting necessary meds to his heart and so that could have been a big factor in why he was so uncomfortable and why he was all over the place. The thought is that normal post-op swelling began to pull the line out and then when Job was jerking and thrashing about this morning, he yanked it out the rest of the way.
It probably also set us back a day in terms of moving forward. He wasn't actually stable "just" recovering from yesterday anyway, but because of this issue they needed to slow way down and just paralyze him again so he could begin to recover.
Next echo comes to assess the function of his heart.
10:06am update:
It's been a rough morning emotionally because they lifted Job's paralysis meds and so he's been able to move... but that means we've been physically restraining Job as he flails and writhes and screams. Except his scream is soundless because he's intubated.
We just got kicked out of the room so they can do this little surgery to place new lines (which he needs for access and meds). Once he has stable line access then they are going to work to getting him off the ventilator. The tube he has in his mouth for that is really uncomfortable and he hates it and that's probably the biggest source of his irritability.
I didn't get a good picture but there are about 20 people his room right now. His intravenous jugular (IJ) line in his neck was about to blow and it got pretty intense, there were rushing to get the PICC established.
He's pretty out of it but the issue is that they need him to wake up so they can extubate. But when he wakes up he's hurting/scared/mad. So then his numbers plummet and he moves too much. We can't get him comfortable.
Once he gets these new lines then we can work towards extubation. Which will help his comfort. And a big relief is his rhythm is better. They were pretty worried last night because it was so messed up.
9:30am update:
The surgery went well, but we are in a 48-72 hour period that is very turbulent.
Right now Job is having a lot of heart rate/rhythm/pressure issues, which isn't out of the ordinary for someone getting used to a new heart.
And as he slowly shakes off his sedation, he is obviously very uncomfortable. Goes back and forth between sleeping and silently thrashing around when awake. He wants to scream but he can't because of intubation.
Right now they have Job on an external pace maker to control his rhythm.
He came out of surgery with a pretty significant fever, which contributed to his high heart rate (~210). His fever is under control now, and his heart rate is down (they are pacing him at 150).
Also contributing to his high heart rate is that his new heart is smaller than his old one. In particular, his right ventricle is smaller and quite stiff right now. Needs time to adjust to being in a new body.
When Job falls asleep, his blood pressure goes down to a level lower than desired, so they've given him fluids and other medical therapy to manage his blood pressure.
Job's discomfort and fear are things we'll be dealing with all day and probably through the weekend.
We're praying for Job and for you all!
ReplyDeleteI don’t know you or your family, I’m a friend of Melinda Wilkinson... just want you all to know I’m following your story and praying so hard for your little boy and family!
ReplyDeleteWe’re continuing to pray for Job’s new little heart. Grateful for the answer to prayers. Much love from the Cooper tribe
ReplyDelete