I was at the tail end of my therapy session yesterday when I received an urgent call from the med center telling me that I should get there asap.
Torrey's blood pressure was not responding to three types of meds, and they were maxed out on the dosage. As a result, his blood pressure was getting lower and lower by the second.
I arrived with my brother to find my Mom was already there, and my Dad was on his way.
For the next two hours we tried to keep Torrey awake by talking to him, praying, and playing recordings of Thalia. Torrey's dad left Cal City immediately and joined us later that evening.
The doctors said he could probably only survive a couple of hours in this condition.
Finally, he started responding to the meds, and his blood pressure stabilized.
He was in a lot of pain, but the nurse didn't want to give him pain meds until his blood pressure was more stable. The next few hours were very tough, trying to get Torrey through his pain. Finally, he was stable enough, and he got the much needed relief.
While he had a very restful night, he started bleeding internally again, (very profusely according to the doctors), and he had to get 3 units of blood, along with plasma overnight.
By this morning, the bleeding had reduced quite a bit and his overall condition seemed better than yesterday. He is now on 2 blood pressure meds instead of 3, but I received word from the kidney specialist that the dialysis machine has been unable to remove any fluid from his body for the last week. They would like to discontinue dialysis until Torrey is more stable.
Obviously this is not the most encouraging news for us all, but Torrey was in good spirits today, and as you know this is often an hour to hour or day by day process, and the doctors cannot predict the likely outcome.
In the meantime, I managed to wrench my neck this morning into a 'severe muscle spasm'. I was prescribed a muscle relaxer and some pain meds, along with a referral to a physical therapy.....Blue Sheild is not likely the biggest fan of the Buell-Ward household these days! :)
We have a family conference on Sunday with the medical staff to recap the events of the past couple of weeks and further discuss Torrey's long-term prognosis.
We'll keep you posted on how that goes.
In the meantime, please pray for Torrey's comfort and strength. The next couple of days will be critical.
Regards,
Monica
Friday, June 27, 2008
Wednesday, June 25, 2008
A couple of tough days
I arrived at the hospital yesterday morning with Torrey very agitated, breathing heavily.
He apparently had not slept at all the night before and, while very much awake, was not very mentally stable.
It was a really tough day of trying to interpret what was bothering Torrey - from leg cramps, to an itchy face, to needing suction.
Because of his procedures on Monday, his Monday dose of dialysis had been setup to not take any fluid from his body (to minimize the risk of bleeding issues).
Since they did not order dialysis for Tuesday, he was extremely swollen. This made things much worse for him.
By the time I made it to the night visit, I was hanging on by an emotional thread, and he didn't seem to be calming down at all. Luckily my Dad had visited during the afternoon/evening, and my brother was with me for the night visit. I think that was the only thing that kept me sane.
The night nurse very kindly suggested that perhaps I take a 24-hour breather to re-group and rejuvenate. The emotional roller coaster had taken its toll, and if I let it get too bad, that wouldn't do anyone any good.
So, luckily, both parents had today off from work and were able to stay with Torrey, while I was able to get a much needed break.
I've scheduled a long overdue therapy session for tomorrow morning, and have worked with my parents on coming up with a sensible routine as far as hospital visits go.
I checked-in with the nurse this morning, and was told that Torrey was agitated in the early morning; his blood pressure dropped severely during dialysis so they had to stop....they had maxed him out on his blood pressure meds, so they had no choice. Unfortunately, no fluids were taken off again, so they have scheduled dialysis again for tomorrow in an attempt get something out of him and reduce the swelling and risk to his lungs.
As of this afternoon, I got word that he was able to get some much needed rest with cat naps here and there, and his respiratory rate seemed to stabilize a bit. Miraculously, I've been able to sleep quite well the past couple of nights, so I feel better prepared to face what tomorrow brings.
Here's hoping for a better tomorrow.
-Monica
He apparently had not slept at all the night before and, while very much awake, was not very mentally stable.
It was a really tough day of trying to interpret what was bothering Torrey - from leg cramps, to an itchy face, to needing suction.
Because of his procedures on Monday, his Monday dose of dialysis had been setup to not take any fluid from his body (to minimize the risk of bleeding issues).
Since they did not order dialysis for Tuesday, he was extremely swollen. This made things much worse for him.
By the time I made it to the night visit, I was hanging on by an emotional thread, and he didn't seem to be calming down at all. Luckily my Dad had visited during the afternoon/evening, and my brother was with me for the night visit. I think that was the only thing that kept me sane.
The night nurse very kindly suggested that perhaps I take a 24-hour breather to re-group and rejuvenate. The emotional roller coaster had taken its toll, and if I let it get too bad, that wouldn't do anyone any good.
So, luckily, both parents had today off from work and were able to stay with Torrey, while I was able to get a much needed break.
I've scheduled a long overdue therapy session for tomorrow morning, and have worked with my parents on coming up with a sensible routine as far as hospital visits go.
I checked-in with the nurse this morning, and was told that Torrey was agitated in the early morning; his blood pressure dropped severely during dialysis so they had to stop....they had maxed him out on his blood pressure meds, so they had no choice. Unfortunately, no fluids were taken off again, so they have scheduled dialysis again for tomorrow in an attempt get something out of him and reduce the swelling and risk to his lungs.
As of this afternoon, I got word that he was able to get some much needed rest with cat naps here and there, and his respiratory rate seemed to stabilize a bit. Miraculously, I've been able to sleep quite well the past couple of nights, so I feel better prepared to face what tomorrow brings.
Here's hoping for a better tomorrow.
-Monica
Monday, June 23, 2008
New Dialysis Tunnel
Torrey got through both tunnel procedures today with flying colors.
His dialysis tunnel catheter in the shoulder will be a much safer way to administer treatments, and can last up to 6 months w/o having to change it.
His medicine catheter, also inserted into the shoulder, will allow easier access for his various medications.
Breathing tube is still likely a few days off from being removed....he still hasn't passed his test yet, but I think he is getting close.
We have little improvement in his blood pressure as well, but at least the medicine continues to work, and they seem able to reduce dosages every now and then.
These are two milestones that Torrey needs to meet before we can consider any type of transplant option.
At the home front, we are very happy to have my brother now living with us. He'll be dividing his time between here and LA, and has agreed to be our live-in 'Manny' for as long as we need him.
Thalia is very happy, and I can already tell how much more relaxed she has been around the house in the last 24 hours.
Happy Monday to all,
Monica
His dialysis tunnel catheter in the shoulder will be a much safer way to administer treatments, and can last up to 6 months w/o having to change it.
His medicine catheter, also inserted into the shoulder, will allow easier access for his various medications.
Breathing tube is still likely a few days off from being removed....he still hasn't passed his test yet, but I think he is getting close.
We have little improvement in his blood pressure as well, but at least the medicine continues to work, and they seem able to reduce dosages every now and then.
These are two milestones that Torrey needs to meet before we can consider any type of transplant option.
At the home front, we are very happy to have my brother now living with us. He'll be dividing his time between here and LA, and has agreed to be our live-in 'Manny' for as long as we need him.
Thalia is very happy, and I can already tell how much more relaxed she has been around the house in the last 24 hours.
Happy Monday to all,
Monica
Sunday, June 22, 2008
Beginning Week 5
Yesterday and today have been good days for Torrey.
He has the feeding tube removed from his nose, and can now process the nourishment through his stomach (via a tube through his mouth). His stomach has had some pain at the end of the feedings, but a low-does pain reliever seems to do the trick (w/o knocking him out for two days!).
He has failed his breathing trials (technically he's passed, but it has been borderline, so they don't want to take chances). I have noticed he gets better and better each time, though, so I hope it is a matter of days now before he can breathe on his own.
He has been extremely alert the last few days. I do notice that he is forgetful, and sometimes he is a bit 'out of it', but I am told this is normal and can go on for a while.
He indicated today that he feels really good - that he doesn't feel like he is critically ill.
The doctors are actually in awe of the fact that he is so alert, despite having such a huge issue with his blood pressure.
Speaking of blood pressure, we haven't made much progress in that arena. His blood pressure drops no matter what happens in a day - dialysis, sleeping, etc.; it just drops at the drop of a hat for no reason, so they have to keep him on the levofed at high levels.
I figure we'll concentrate on the breathing first, blood pressure next, and then kick the physical therapy into high gear, and hope that his liver starts working in the meantime.
The other good news (can't recall if I mentioned this in an earlier post), but the bleeding in his lungs has stopped. His chest x-rays continue to look better each day.
Tomorrow he is getting two somewhat invasive procedures - a tunnel catheter near his neck for dialysis (less prone to infection and more permanent); and a 'med catheter', also near his neck, in place of a pic line. Fingers crossed these both go well.
Hoping you all are staying cool this weekend,
Monica
He has the feeding tube removed from his nose, and can now process the nourishment through his stomach (via a tube through his mouth). His stomach has had some pain at the end of the feedings, but a low-does pain reliever seems to do the trick (w/o knocking him out for two days!).
He has failed his breathing trials (technically he's passed, but it has been borderline, so they don't want to take chances). I have noticed he gets better and better each time, though, so I hope it is a matter of days now before he can breathe on his own.
He has been extremely alert the last few days. I do notice that he is forgetful, and sometimes he is a bit 'out of it', but I am told this is normal and can go on for a while.
He indicated today that he feels really good - that he doesn't feel like he is critically ill.
The doctors are actually in awe of the fact that he is so alert, despite having such a huge issue with his blood pressure.
Speaking of blood pressure, we haven't made much progress in that arena. His blood pressure drops no matter what happens in a day - dialysis, sleeping, etc.; it just drops at the drop of a hat for no reason, so they have to keep him on the levofed at high levels.
I figure we'll concentrate on the breathing first, blood pressure next, and then kick the physical therapy into high gear, and hope that his liver starts working in the meantime.
The other good news (can't recall if I mentioned this in an earlier post), but the bleeding in his lungs has stopped. His chest x-rays continue to look better each day.
Tomorrow he is getting two somewhat invasive procedures - a tunnel catheter near his neck for dialysis (less prone to infection and more permanent); and a 'med catheter', also near his neck, in place of a pic line. Fingers crossed these both go well.
Hoping you all are staying cool this weekend,
Monica
Friday, June 20, 2008
Ending Week Four
Torrey was extremely alert today, but we had some issues early on with his blood pressure.
He had the shakes and for the first time since getting admitted to the hospital, he asked for a blanket. It was a difficult morning, but he seemed to get more stable in the latter part of the afternoon.
He has a low-grade fever, and is back on antibiotics.
He was able to use a makeshift keyboard to spell out some messages (mostly instructions on how to make him more comfortable).
It takes a lot out of him, so we only use this method of communication if he has something urgent he needs to tell us.
He had more anxiety issues today, but we have a pretty good method to calm him down that doesn't involve drugs. We find that adjusting his position in a way that expands his lungs seems to help, and of course, keeping conversation light as his respiratory rate comes down.
While he technically passed both of his breathing tests, he barely did so. The doctors do not yet feel comfortable taking him off the breathing tube, and Torrey admitted that he didn't feel ready, so we'll hold off a few days. They will administer this test each day, so hopefully we see progress.
We had a very discouraging conversation with the liver specialist today about transplant options. I'd rather not go into too much detail about it right now, but basically they aren't being as helpful or supportive as we'd like.
As we close in on the end of week four, please continue to pray for Torrey's liver to show signs of life and recovery. His spirits are high, and he seems stronger each day despite his condition.
He has already turned one corner (waking up), so now we just need to turn a couple more to get to stability.
Have a great weekend all,
Monica
He had the shakes and for the first time since getting admitted to the hospital, he asked for a blanket. It was a difficult morning, but he seemed to get more stable in the latter part of the afternoon.
He has a low-grade fever, and is back on antibiotics.
He was able to use a makeshift keyboard to spell out some messages (mostly instructions on how to make him more comfortable).
It takes a lot out of him, so we only use this method of communication if he has something urgent he needs to tell us.
He had more anxiety issues today, but we have a pretty good method to calm him down that doesn't involve drugs. We find that adjusting his position in a way that expands his lungs seems to help, and of course, keeping conversation light as his respiratory rate comes down.
While he technically passed both of his breathing tests, he barely did so. The doctors do not yet feel comfortable taking him off the breathing tube, and Torrey admitted that he didn't feel ready, so we'll hold off a few days. They will administer this test each day, so hopefully we see progress.
We had a very discouraging conversation with the liver specialist today about transplant options. I'd rather not go into too much detail about it right now, but basically they aren't being as helpful or supportive as we'd like.
As we close in on the end of week four, please continue to pray for Torrey's liver to show signs of life and recovery. His spirits are high, and he seems stronger each day despite his condition.
He has already turned one corner (waking up), so now we just need to turn a couple more to get to stability.
Have a great weekend all,
Monica
Thursday, June 19, 2008
Breathing Tube Progress
Torrey has been slowly getting weaned off of the breathing tube for the past couple of days.
He passed the first of a series of tests tonight that showed he is capable of breathing without what they refer to as 'pressure support'. They will do another test tomorrow, and, if he passes, they will consider removing the tube.
There is risk that they'll need to re-insert it if his airways swell, but it is a risk we are willing to take.
We felt a bit discouraged today with a discussion we had with this doctors about his kidney function. They fear that because the kidneys have been out of commission for so long, they have likely suffered permanent damage. This would mean that he would be on dialysis regularly for the rest of his life (unless, of course, he went through a kidney transplant). There is no way to know for sure until his liver function returns or he gets a new liver.
I am meeting again tomorrow with the liver specialists to discuss his candidacy for transplant, and to see if they have any other opinions/data as to the likelihood of rejuvenation, given that we are well past the typical two-week mark. I doubt I'll like anything I hear, but after doing some research, I am prepared with a more comprehensive list of questions this time around.
Fingers crossed we get that breathing tube out tomorrow!
Cheers,
Monica
He passed the first of a series of tests tonight that showed he is capable of breathing without what they refer to as 'pressure support'. They will do another test tomorrow, and, if he passes, they will consider removing the tube.
There is risk that they'll need to re-insert it if his airways swell, but it is a risk we are willing to take.
We felt a bit discouraged today with a discussion we had with this doctors about his kidney function. They fear that because the kidneys have been out of commission for so long, they have likely suffered permanent damage. This would mean that he would be on dialysis regularly for the rest of his life (unless, of course, he went through a kidney transplant). There is no way to know for sure until his liver function returns or he gets a new liver.
I am meeting again tomorrow with the liver specialists to discuss his candidacy for transplant, and to see if they have any other opinions/data as to the likelihood of rejuvenation, given that we are well past the typical two-week mark. I doubt I'll like anything I hear, but after doing some research, I am prepared with a more comprehensive list of questions this time around.
Fingers crossed we get that breathing tube out tomorrow!
Cheers,
Monica
Wednesday, June 18, 2008
Liver Update
Torrey was much more alert today.
He apparently slept well last night, at least by ICU standards which is pretty low.
The 'gurney' chair definitely took a lot out of him.
He was in it again this morning, so by the time I arrived to visit, he was pretty tired, but alert enough to where we could carry on our version of a conversation.
They've been able to start the 'weaning' process again for his breathing tube. They make adjustments to the settings that make him more independent.
The only thing keeping us from a tracheostomy now is his blood pressure.
They aren't weaning him off of the Levofed (the BP meds) as much as they'd like.
His pressure seems to drop so quickly at odd times - sometimes due to dialysis and other times just due to him falling asleep.
If they are able to safely wean him from his breathing tube, though, he may be able to simply breathe on his own.
His liver still doesn't seem to be exhibiting any signs of recovery. This doesn't mean it won't - it just means that the doctors are starting to get really concerned as to whether it will ever start the rejuvenation process. We still have faith that it will, but they are starting to come to the conclusion that he needs a transplant. Unfortunately, he cannot get on a list until he is free of infection, and much more stable.
So, as Torrey shows signs of getting stronger, we just need to pray that his body follows suit.
Regards,
Monica
He apparently slept well last night, at least by ICU standards which is pretty low.
The 'gurney' chair definitely took a lot out of him.
He was in it again this morning, so by the time I arrived to visit, he was pretty tired, but alert enough to where we could carry on our version of a conversation.
They've been able to start the 'weaning' process again for his breathing tube. They make adjustments to the settings that make him more independent.
The only thing keeping us from a tracheostomy now is his blood pressure.
They aren't weaning him off of the Levofed (the BP meds) as much as they'd like.
His pressure seems to drop so quickly at odd times - sometimes due to dialysis and other times just due to him falling asleep.
If they are able to safely wean him from his breathing tube, though, he may be able to simply breathe on his own.
His liver still doesn't seem to be exhibiting any signs of recovery. This doesn't mean it won't - it just means that the doctors are starting to get really concerned as to whether it will ever start the rejuvenation process. We still have faith that it will, but they are starting to come to the conclusion that he needs a transplant. Unfortunately, he cannot get on a list until he is free of infection, and much more stable.
So, as Torrey shows signs of getting stronger, we just need to pray that his body follows suit.
Regards,
Monica
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