Torrey wasn't tolerating his feeding today very well.
He is getting swollen again from the lack of dialysis, which may be the cause; but, to be safe, they did a stomach xray to ensure there is no blockage.
They discontinued his feedings until they can figure out the problem.
He was in a lot of pain early in the day, so they once again gave him plenty of meds which put him in a peaceful slumber.
My dad stayed later than I did today, and was there when Torrey woke up. Apparently he was not in any pain when he woke up, so I was very happy to hear that.
He he was able to get several treatments of the milk thistle throughout last night and today, but we have no idea how long something like this would take to work. My only regret is that we didn't find out about it sooner, though I am not sure the docs would have allowed it early on.
On a good note, despite all the pain meds that Torrey is getting right now, his blood pressure has not suffered anymore. He is still on all 3 'vasopressers'; but, they started to try and wean him off again, which is something they haven't been able to do for a couple of days now. We were at the absolute limit as of this morning, so the pain meds could have put him into another coma and forced his blood pressure down to a dangerous level again. Luckily this did not happen, and hopefully they can continue to wean him to a level that will allow us to resume dialysis treatment. This will be crucial to his survival.
Thalia had another good round of therapy today, and she looks forward to her sessions with 'Ms Kathleen'.
I have to admit I am coping much better than I thought I would at this point. Your comments, emails, voicemails, cards, food, etc., continue to keep me strong. That, along with having the best family in the world, has made all the difference.
Regards,
Monica
Monday, June 30, 2008
Sunday, June 29, 2008
Today's Conference
There wasn't a lot of new information in our family conference with the doctors today.
He still cannot get dialysis treatment while his blood pressure requires 3 vasopressers to be stable.
Not getting dialysis is obviously very dangerous for Torrey, so we need his blood pressure to be stable on its own so he can continue treatment.
It is difficult for doctors to predict how long he can survive in this state, but that has pretty much been the story all along.
Torrey had a lot of pain today, so they increased his pain meds to make him comfortable. He was very sleepy from about 2pm onwards.
In a last ditch effort to get his liver working again, I asked the doctors if it was ok for us to bring in some milk thistle to add to his feedings. Milk thistle has been known to help rejuvenate the liver, but is not used very commonly by medical facilities. They agreed to this, and his first dose was given at his 9pm feeding.
Here's hoping for a miracle.
Regards,
Monica
He still cannot get dialysis treatment while his blood pressure requires 3 vasopressers to be stable.
Not getting dialysis is obviously very dangerous for Torrey, so we need his blood pressure to be stable on its own so he can continue treatment.
It is difficult for doctors to predict how long he can survive in this state, but that has pretty much been the story all along.
Torrey had a lot of pain today, so they increased his pain meds to make him comfortable. He was very sleepy from about 2pm onwards.
In a last ditch effort to get his liver working again, I asked the doctors if it was ok for us to bring in some milk thistle to add to his feedings. Milk thistle has been known to help rejuvenate the liver, but is not used very commonly by medical facilities. They agreed to this, and his first dose was given at his 9pm feeding.
Here's hoping for a miracle.
Regards,
Monica
Saturday, June 28, 2008
Still fighting strong
This morning was not Torrey's best - he was in a lot of pain and very confused.
Luckily he responds well to the pain medication - it makes him a bit sleepy but doesn't knock him out for days.
By the afternoon, he seemed to be doing much better, and was extremely alert.
One of our favorite night nurses, Richard Love (yes, that is his real name) is back from vacation and taking care of Torrey tonight. The word flamboyant doesn't even begin to describe Nurse Richard Love. He is so positive, nurturing, and caring that I know I'll sleep well tonight knowing that Torrey is in good hands tonight.
Tomorrow we are having a sit-down with the doctors to discuss our long-term plan, and address some concerns we have over his treatment.
Hoping you all are having a great weekend,
Monica
Luckily he responds well to the pain medication - it makes him a bit sleepy but doesn't knock him out for days.
By the afternoon, he seemed to be doing much better, and was extremely alert.
One of our favorite night nurses, Richard Love (yes, that is his real name) is back from vacation and taking care of Torrey tonight. The word flamboyant doesn't even begin to describe Nurse Richard Love. He is so positive, nurturing, and caring that I know I'll sleep well tonight knowing that Torrey is in good hands tonight.
Tomorrow we are having a sit-down with the doctors to discuss our long-term plan, and address some concerns we have over his treatment.
Hoping you all are having a great weekend,
Monica
Friday, June 27, 2008
Therapy, Interrupted
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
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
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
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