Hi all,
As promised, I am providing information on the Memorial Service for Torrey.
Given the fact that many people are out of town this week, and that many will be out in the coming weeks, we opted to have two events. Feel free to attend both, but know that we set this up to provide adequate opportunity for our friends and family to pay their final respects. Under no circumstances would Torrey have wanted anyone adjusting family vacations, etc., on his behalf.
But, the more the merrier. :)
Details are as followed:
Viewing:
Sunday, July 13th
Open from 3pm to 7pm
Mount Vernon Memorial Park
Greenback Lane
Fair Oaks, CA
916-969-1251
Memorial Service (to be followed with a reception - see below):
Saturday, July 19th, 3pm
Mount Vernon Memorial Park
Greenback Lane
Fair Oaks, CA
916-969-1251
Reception to immediately follow Memorial Service (approximately 4:30pm)
Marriott Hotel
Rancho Cordova, CA
Sunrise & 50
12111 Point East Way
916-638-1100
The few times that Torrey and I discussed this topic over the years, he always said he didn't want folks crying, upset and depressed at a funeral. He wanted a big 'celebration of life' party. That is exactly what we intend on providing him and all of you.
All are welcome to attend.
Also, his obituary will be posted in the Sacramento Bee starting tomorrow (both in print and online). We've stated that in lieu of flowers, please make a donation to the St Baldrick's foundation www.stbaldricks.org. Torrey was extremely passionate about this cause.
Many thanks for the flowers and cards that have already been sent.
Your generosity and kind words have been so appreciated.
Kindest Regards,
the Ward and Buell families
Tuesday, July 8, 2008
Saturday, July 5, 2008
Our Journey Has Come to an End
Torrey passed on peacefully July 4th, at 4:10am.
As our country celebrated the anniversary of our independence, Torrey too was freed of his pain and suffering.
Since my last post, Torrey had taken a turn for the worse.
As of Thursday, he had required a dose of pain medicine every hour in order keep him comfortable and calm.
For the first time in over 5 weeks, his lab results revealed that his kidney and liver functions were worse than when he was admitted.
His heart, though, was still very strong, and it was our intention to allow visitors to see him starting Friday, in order to say final goodbyes. We had decided to start him on a continuous morphine drip on Friday, knowing that he would likely never wake up again.
Unfortunately we never got that chance.
After staying with him until nearly midnight on Thursday, we had left the hospital with Torrey comfortably resting. I had said my final goodbyes to him, before leaving, knowing that the toxins were building up in his body and that this would be the last time he would be mentally alert.
In my goodbye, I promised Torrey that Thalia would always know who her daddy was, and that she would always know what a great man he was. I told him we would never forget what he meant to us as a family. I told him I was sorry that we couldn't do more to save him, that I was sorry he had suffered, and how important he was to me.
I told him about the hundreds of people who were praying for him, and I told him that flights of angels would take him to his rest.
It was pointed out to me by a close friend that Torrey probably took this as permission to let go and be at peace. I wholeheartedly agree.
At 3:50am Friday morning, the nurse called saying that Torrey's blood pressure and heart rate were going down, and they thought it was only a matter of hours before he would pass.
As my father and I were en route to the hospital, I received a call on my cell phone that Torrey had passed already.
It is difficult to put into words how utterly devastated we all feel.
The person who seems to be handling this the best is Thalia.
She had spent the night at my parents house Thursday night, and was awake in bed when we arrived back at the house. I had told my Mom that I needed to be the one who broke the news to her.
So, I got in bed with her and explained to her what had happened. She sat there for a few minutes sucking her thumb and thinking. She had no questions, and asked if we could color.
At first I thought that perhaps she simply didn't understand the finality of all this, but throughout the last 24 hours, she has made several comments that make me feel that she understands much more than I give her credit for.
Having to tell Thalia her dad has died and gone to heaven has been the thing that has given me the most anxiety through this whole process. I was expecting lightning to strike the moment I told her. I was expecting a meltdown, crying, screaming, and devastation.
Instead, I got a little angel who wiped away my tears and forced me to look on the bright side.
I know that all of you are aching with us right now. And I know that all of you still have us in your prayers and your thoughts.
Your support and love through all of this had been monumental, and I am still in awe of how lucky we are to have you in our lives.
I can't put into words how much you have meant through this whole process.
If we can take anything positive out of this experience, it is the faith that your friends and family will be there along with God in your darkest of times. It is also a reaffirmation of what a wonderful person Torrey was, and the impact he had on those who knew him.
I was so lucky to have him as my husband, and I am so grateful that he left me with an angel for a daughter.
In the coming days, I will be leaving information on his memorial service on this blog.
The service will likely take place at Mount Vernon Mortuary, with a reception TBD.
We will also be holding a viewing for those who may not be able to attend the memorial.
Dates and times will be posted here soon.
For anyone who would like to say a few words at his memorial service, please contact me at monicabuell@comcast.net.
We are also asking for any pictures that you might have of Torrey that you can send me via CD or email (at the above address).
Our home address is 3379 Marquam Way; Rancho Cordova, CA 95670.
Love to all,
Monica
As our country celebrated the anniversary of our independence, Torrey too was freed of his pain and suffering.
Since my last post, Torrey had taken a turn for the worse.
As of Thursday, he had required a dose of pain medicine every hour in order keep him comfortable and calm.
For the first time in over 5 weeks, his lab results revealed that his kidney and liver functions were worse than when he was admitted.
His heart, though, was still very strong, and it was our intention to allow visitors to see him starting Friday, in order to say final goodbyes. We had decided to start him on a continuous morphine drip on Friday, knowing that he would likely never wake up again.
Unfortunately we never got that chance.
After staying with him until nearly midnight on Thursday, we had left the hospital with Torrey comfortably resting. I had said my final goodbyes to him, before leaving, knowing that the toxins were building up in his body and that this would be the last time he would be mentally alert.
In my goodbye, I promised Torrey that Thalia would always know who her daddy was, and that she would always know what a great man he was. I told him we would never forget what he meant to us as a family. I told him I was sorry that we couldn't do more to save him, that I was sorry he had suffered, and how important he was to me.
I told him about the hundreds of people who were praying for him, and I told him that flights of angels would take him to his rest.
It was pointed out to me by a close friend that Torrey probably took this as permission to let go and be at peace. I wholeheartedly agree.
At 3:50am Friday morning, the nurse called saying that Torrey's blood pressure and heart rate were going down, and they thought it was only a matter of hours before he would pass.
As my father and I were en route to the hospital, I received a call on my cell phone that Torrey had passed already.
It is difficult to put into words how utterly devastated we all feel.
The person who seems to be handling this the best is Thalia.
She had spent the night at my parents house Thursday night, and was awake in bed when we arrived back at the house. I had told my Mom that I needed to be the one who broke the news to her.
So, I got in bed with her and explained to her what had happened. She sat there for a few minutes sucking her thumb and thinking. She had no questions, and asked if we could color.
At first I thought that perhaps she simply didn't understand the finality of all this, but throughout the last 24 hours, she has made several comments that make me feel that she understands much more than I give her credit for.
Having to tell Thalia her dad has died and gone to heaven has been the thing that has given me the most anxiety through this whole process. I was expecting lightning to strike the moment I told her. I was expecting a meltdown, crying, screaming, and devastation.
Instead, I got a little angel who wiped away my tears and forced me to look on the bright side.
I know that all of you are aching with us right now. And I know that all of you still have us in your prayers and your thoughts.
Your support and love through all of this had been monumental, and I am still in awe of how lucky we are to have you in our lives.
I can't put into words how much you have meant through this whole process.
If we can take anything positive out of this experience, it is the faith that your friends and family will be there along with God in your darkest of times. It is also a reaffirmation of what a wonderful person Torrey was, and the impact he had on those who knew him.
I was so lucky to have him as my husband, and I am so grateful that he left me with an angel for a daughter.
In the coming days, I will be leaving information on his memorial service on this blog.
The service will likely take place at Mount Vernon Mortuary, with a reception TBD.
We will also be holding a viewing for those who may not be able to attend the memorial.
Dates and times will be posted here soon.
For anyone who would like to say a few words at his memorial service, please contact me at monicabuell@comcast.net.
We are also asking for any pictures that you might have of Torrey that you can send me via CD or email (at the above address).
Our home address is 3379 Marquam Way; Rancho Cordova, CA 95670.
Love to all,
Monica
Wednesday, July 2, 2008
No Major Changes
The new attending was not in the ICU today, but I heard he wants to have another 'family conference', I assume to discuss his approach to Torrey's case.
No change in his blood pressure today - his reliance on all three meds was very evident today. As soon as one ran out, his blood pressure started dropping continuously until the nurse 'plugged' in the next dose which then causes it to rise up to a normal rate. I don't think we are any closer to being able to administer the dialysis he so desperately needs.
It didn't appear that he needed quite as much pain medicine today as he did yesterday; I assume the fact that they have stopped feeding him helped in that regard.
He was still fairly weak, but I was able to communicate with him more today than in the past couple of days. He revealed to me that he was sad and basically spelled out 'this sucks' on the paper keyboard. I think 'this sucks' probably understates how he really feels.
I had a great discussion with my therapist today on how to deal with the next week or so, as we get closer to having to make tough decisions on Torrey's behalf. Despite the fact that he has gone w/o dialysis for nearly a week, he seems fairly mentally healthy when he is awake, just still a little cloudy.
We are still praying for a milk thistle miracle (or any miracle), and hope that this new round of doctors continue to think 'outside the box' for treatment that can turn his prognosis around.
In the meantime, our focus now is keeping Torrey comfortable while trying to lift his spirits.
Sara - thank you for the beautiful poem and comments. I'll be in touch shortly.
Goodnight,
Monica
No change in his blood pressure today - his reliance on all three meds was very evident today. As soon as one ran out, his blood pressure started dropping continuously until the nurse 'plugged' in the next dose which then causes it to rise up to a normal rate. I don't think we are any closer to being able to administer the dialysis he so desperately needs.
It didn't appear that he needed quite as much pain medicine today as he did yesterday; I assume the fact that they have stopped feeding him helped in that regard.
He was still fairly weak, but I was able to communicate with him more today than in the past couple of days. He revealed to me that he was sad and basically spelled out 'this sucks' on the paper keyboard. I think 'this sucks' probably understates how he really feels.
I had a great discussion with my therapist today on how to deal with the next week or so, as we get closer to having to make tough decisions on Torrey's behalf. Despite the fact that he has gone w/o dialysis for nearly a week, he seems fairly mentally healthy when he is awake, just still a little cloudy.
We are still praying for a milk thistle miracle (or any miracle), and hope that this new round of doctors continue to think 'outside the box' for treatment that can turn his prognosis around.
In the meantime, our focus now is keeping Torrey comfortable while trying to lift his spirits.
Sara - thank you for the beautiful poem and comments. I'll be in touch shortly.
Goodnight,
Monica
Tuesday, July 1, 2008
New Rotation of Docs
Tomorrow I'll be meeting with the new medical team.
The residents and attending are rotating, so I'll have another session of getting acquainted with another set of personality types.
I have heard that the attending starting tomorrow is very 'aggressive' and cavalier.
I am hoping this proves beneficial for Torrey, as we'll have some tough decisions to make in the next few days.
Torrey was very sleepy for most of today. They increased his pain medication again, but his blood pressure seemed to cope ok. They had to increase his BP meds again, but only after they had been able to wean him a bit. He was pretty weak, but responsive when he was awake.
He apparently had a good night last night. He is bleeding a bit in his GI tract so they took him off feedings this morning. He didn't seem to mind.
As of this evening, he had been awake for a while and not in any pain. We like his night nurse, and feel confident he'll have a good night.
Cherrie - thank you for the information you provided. I will discuss this with the docs first thing. I believe in the beginning they did consider a CAPD, but I don't recall why they didn't move ahead with it. I'll try and get an explanation. I didn't realize it was easier on the BP.
Regards,
Monica
The residents and attending are rotating, so I'll have another session of getting acquainted with another set of personality types.
I have heard that the attending starting tomorrow is very 'aggressive' and cavalier.
I am hoping this proves beneficial for Torrey, as we'll have some tough decisions to make in the next few days.
Torrey was very sleepy for most of today. They increased his pain medication again, but his blood pressure seemed to cope ok. They had to increase his BP meds again, but only after they had been able to wean him a bit. He was pretty weak, but responsive when he was awake.
He apparently had a good night last night. He is bleeding a bit in his GI tract so they took him off feedings this morning. He didn't seem to mind.
As of this evening, he had been awake for a while and not in any pain. We like his night nurse, and feel confident he'll have a good night.
Cherrie - thank you for the information you provided. I will discuss this with the docs first thing. I believe in the beginning they did consider a CAPD, but I don't recall why they didn't move ahead with it. I'll try and get an explanation. I didn't realize it was easier on the BP.
Regards,
Monica
Monday, June 30, 2008
The Start of Week 6
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
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
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
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
Tuesday, June 17, 2008
A good milestone tonight
Torrey was very alert today, but still a bit sleepy.
He didn't sleep very well last night, and his respiratory rate was up quite a bit in the morning, so the nurse gave him some pain medication. He had more issues with his blood pressure as a result, so they had to increase his blood pressure medication.
He seemed to be ok the rest of the day and enjoyed watching the B-ball playoff game.
After the game, the night nurse thought it would be a good idea to try and tire Torrey out by moving him into a 'gurney chair' for a little while. This is a cushioned chair that basically looks like a small propped-up bed on wheels. The nurse (she is our favorite night nurse - her name is Monica by the way), indicated that if they were successful in moving him into the chair tonight, that she would recommend that they do this during the day periodically to put him in a better breathing position. It would also keep him active during the day so he can sleep better at night.
It only took them about 10 minutes to move him, and it was very successful. His respiratory rate improved immediately, and the strain of making such a move did not seem to affect him.
He did look extremely exhausted once he settled in, but hopefully that means that as I type this, he is sleeping well. They expected that he might have some slight pain b/c he hadn't been in such a position in over 3 weeks, but when I asked him if he was sore anywhere he shook his head 'no'.
For the first time in over 3 weeks, I was able to give him a goodnight kiss on the face.
I know I will definitely sleep well tonight!
Thalia had her first appointment with the therapist today. It went really well, and we look forward to her getting more 1:1 time next week.
I've received more cards, emails, voicemails, etc.., this week.
It's been nice hearing from folks that we've been out of touch with for a while; I wish the reconnecting was done under better circumstances, but it is nice to hear from everyone all the same. I promise to start catching-up on responses as I am truly interested in how you all are doing!
I also appreciate hearing from the various groups of folks checking this blog religiously, reminding me that we are still in your thoughts, and continuing to offer help and support. Your kindness and generosity continue to amaze me every day.
Good night and God Bless,
Monica
He didn't sleep very well last night, and his respiratory rate was up quite a bit in the morning, so the nurse gave him some pain medication. He had more issues with his blood pressure as a result, so they had to increase his blood pressure medication.
He seemed to be ok the rest of the day and enjoyed watching the B-ball playoff game.
After the game, the night nurse thought it would be a good idea to try and tire Torrey out by moving him into a 'gurney chair' for a little while. This is a cushioned chair that basically looks like a small propped-up bed on wheels. The nurse (she is our favorite night nurse - her name is Monica by the way), indicated that if they were successful in moving him into the chair tonight, that she would recommend that they do this during the day periodically to put him in a better breathing position. It would also keep him active during the day so he can sleep better at night.
It only took them about 10 minutes to move him, and it was very successful. His respiratory rate improved immediately, and the strain of making such a move did not seem to affect him.
He did look extremely exhausted once he settled in, but hopefully that means that as I type this, he is sleeping well. They expected that he might have some slight pain b/c he hadn't been in such a position in over 3 weeks, but when I asked him if he was sore anywhere he shook his head 'no'.
For the first time in over 3 weeks, I was able to give him a goodnight kiss on the face.
I know I will definitely sleep well tonight!
Thalia had her first appointment with the therapist today. It went really well, and we look forward to her getting more 1:1 time next week.
I've received more cards, emails, voicemails, etc.., this week.
It's been nice hearing from folks that we've been out of touch with for a while; I wish the reconnecting was done under better circumstances, but it is nice to hear from everyone all the same. I promise to start catching-up on responses as I am truly interested in how you all are doing!
I also appreciate hearing from the various groups of folks checking this blog religiously, reminding me that we are still in your thoughts, and continuing to offer help and support. Your kindness and generosity continue to amaze me every day.
Good night and God Bless,
Monica
Monday, June 16, 2008
Sedatives Wearing Off
For tonight's visit, Torrey was awake and fairly alert.
He is still pretty weak from the medication, but luckily his respiratory rate was reasonable so no immediate anxiety issues.
He received a beautiful Shutterfly book of Thalia for Fathers' Day from a very special family.
I was able to show him this in detail. It was a struggle for him to keep his eyes open, but he looked at every picture. We were also able to give him Thalia's Fathers' Day gift - a new wallet.
The internal bleeding has stopped, and they have been weaning him off the blood pressure medicine. The anxiety meds, in addition to making him sleep, also made his blood pressure dangerously low, and they had to administer 10x the normal dose to stabilize him the other night.
I am cautiously optimistic that this week will result in more milestones, as overcome the setbacks from the past few days. One positive thing that has remained constant is that he was taken off his antibiotics a few days ago. His white blood count, while still high, did not go up and he only got a temperature for about a day.
Regards,
Monica
He is still pretty weak from the medication, but luckily his respiratory rate was reasonable so no immediate anxiety issues.
He received a beautiful Shutterfly book of Thalia for Fathers' Day from a very special family.
I was able to show him this in detail. It was a struggle for him to keep his eyes open, but he looked at every picture. We were also able to give him Thalia's Fathers' Day gift - a new wallet.
The internal bleeding has stopped, and they have been weaning him off the blood pressure medicine. The anxiety meds, in addition to making him sleep, also made his blood pressure dangerously low, and they had to administer 10x the normal dose to stabilize him the other night.
I am cautiously optimistic that this week will result in more milestones, as overcome the setbacks from the past few days. One positive thing that has remained constant is that he was taken off his antibiotics a few days ago. His white blood count, while still high, did not go up and he only got a temperature for about a day.
Regards,
Monica
Sleepy Head
Father's Day was a big sleepfest for Torrey.
The Ativant (note I had misspelled it in the previous entry) was used a few more times when Torrey had respiratory trouble that they thought was due to anxiety issues.
It has stayed in his body for too long and built up, causing him to be very sleep.
They have discovered more internal bleeding which they believe is a result of his tube feedings. So, they've put that off for now to see if it clears up.
The doctors are concerned about his sleepiness so they've discontinued the Ativant and are considering alternatives for when he wakes up again in case he has more breathing trouble.
He seems comfortable, though.
They are considering a tracheotomy later this week to get him off the breathing tube. It would obviously be temporary, and would make breathing much easier for him. It will also likely make him less prone to panic attacks. Eventually, he could eat real food around it. It is very risky in his condition to insert such a tube, but so far any invasive procedures they have done on him as not resulted in excessive bleeding, so we feel confident it would be a good course of action. He would also be able to speak with it, which would be a huge milestone.
We are leaving now for his 'good night' visit. Will update the blog if there are any significant updates.
Happy Monday,
Monica
The Ativant (note I had misspelled it in the previous entry) was used a few more times when Torrey had respiratory trouble that they thought was due to anxiety issues.
It has stayed in his body for too long and built up, causing him to be very sleep.
They have discovered more internal bleeding which they believe is a result of his tube feedings. So, they've put that off for now to see if it clears up.
The doctors are concerned about his sleepiness so they've discontinued the Ativant and are considering alternatives for when he wakes up again in case he has more breathing trouble.
He seems comfortable, though.
They are considering a tracheotomy later this week to get him off the breathing tube. It would obviously be temporary, and would make breathing much easier for him. It will also likely make him less prone to panic attacks. Eventually, he could eat real food around it. It is very risky in his condition to insert such a tube, but so far any invasive procedures they have done on him as not resulted in excessive bleeding, so we feel confident it would be a good course of action. He would also be able to speak with it, which would be a huge milestone.
We are leaving now for his 'good night' visit. Will update the blog if there are any significant updates.
Happy Monday,
Monica
Saturday, June 14, 2008
More Panic Attacks
Torrey was able to get about 4 continuous hours of sleep last night, which was good, but he continued to have a high respiratory rate throughout the day.
The doctors investigated the possibility of a certain anxiety medication that would help keep him calm during the day and help him sleep at night w/o compromising his ability to make progress. Unfortunately, he failed the necessary test to be able to start these meds, as it was concluded that he would be at an increased risk for heart problems. I can't recall the name of this particular drug.
They are assessing other options currently, but in the meantime, I had yet another harrowing night tonight trying to get him to calm down. After 90 minutes of respiratory distress (and two failed doses of his normal sedative), they finally resorted to administering adavant (anxiety medication). After 15 minutes, he finally fell asleep with normal breathing.
I pray we get lucky and find that this is the good choice, and have no further setbacks. I am hoping to find out tomorrow whether the doctors intend on keeping him on the adavant, or whether they have found something more suitable.
Keeping this post short tonight as I am exhausted and can't wait to get to bed.
Happy Father's Day to you all you dads out there!
-Monica
The doctors investigated the possibility of a certain anxiety medication that would help keep him calm during the day and help him sleep at night w/o compromising his ability to make progress. Unfortunately, he failed the necessary test to be able to start these meds, as it was concluded that he would be at an increased risk for heart problems. I can't recall the name of this particular drug.
They are assessing other options currently, but in the meantime, I had yet another harrowing night tonight trying to get him to calm down. After 90 minutes of respiratory distress (and two failed doses of his normal sedative), they finally resorted to administering adavant (anxiety medication). After 15 minutes, he finally fell asleep with normal breathing.
I pray we get lucky and find that this is the good choice, and have no further setbacks. I am hoping to find out tomorrow whether the doctors intend on keeping him on the adavant, or whether they have found something more suitable.
Keeping this post short tonight as I am exhausted and can't wait to get to bed.
Happy Father's Day to you all you dads out there!
-Monica
Friday, June 13, 2008
A little insomnia
Since I left Torrey last night on a high of sorts, I decided to spend the morning with Thalia.
We opted to have breakfast at Stonebrooks (formerly the Lyons on White Rock) before starting her day at school.
We had a lovely morning, and I was in a great mood as I strolled into the ICU.
Unfortunately, Torrey had not slept a wink all night, and was extremely agitated.
He was in the middle of a horrible anxiety attack when I arrived and I tried to work with the nurse to get him to calm down. We finally had to resort (much to the dismay of the doctor) to giving him a light sedative to calm him down.
The primary resident is going to consult with the team on alternative treatment they can administer when he has these attacks so we don't risk a relapse by using the sedatives. If you recall from previous posts, the sedatives seem to be the culprit in lowering his blood pressure and making him less alert, so we try to avoid them at all costs.
According to the night nurse, Torrey was trying to avoid sedatives all night, but the sleep deprivation just became too much for him. I have comfort in knowing that he realizes what is best for himself, and tries his hardest to be a good patient.
Once he calmed down enough to take a nap, he seemed to do ok. He still didn't seem quite right this evening when I visited, but the nurse said the priority tonight will be to get him to sleep. So, she closed the door to his room to give him some quiet, and I rubbed his forehead until he fell asleep. I sat there for a while to watch over him, and he only woke up briefly a couple of times.
The nurse intended on bothering him as little as possible tonight to ensure he gets some steady sleep.
His white blood count was down a bit today; he was temporarily taken off antibiotics to see how his body reacts to this. He is still on a low dose of the blood pressure meds, and he had a break from dialysis today.
His dialysis will start again tomorrow, but they want to also ensure they squeeze in some physical therapy which cannot take place during the dialysis treatment. We are eager to get him writing so he can communicate better. His range of motion seems to have improved despite the sleep deprivation. He can reach up high enough to touch his face - we just have to make sure that during his 'hazy' times that he doesn't try to pull out the breathing tube. So far he hasn't grabbed a hold of it too many times.
Thalia seemed very happy to have the extra time with me this morning; she had a meltdown after school today about not being able to visit Torrey, but when I suggested she draw a picture of him in the hospital, she calmed right down and got to work. This was a suggestion that the social worker had made. She's made him some get well cards and done other projects, but I was amazed at how accurate her drawing was. She is obviously picking up and absorbing much more than we thought.
I'll be making an early phone call tomorrow to Torrey's night nurse to see how he slept overnight. If I have time, I'll update the blog with how he did.
Hope you all are having a wonderful weekend.
- Monica
We opted to have breakfast at Stonebrooks (formerly the Lyons on White Rock) before starting her day at school.
We had a lovely morning, and I was in a great mood as I strolled into the ICU.
Unfortunately, Torrey had not slept a wink all night, and was extremely agitated.
He was in the middle of a horrible anxiety attack when I arrived and I tried to work with the nurse to get him to calm down. We finally had to resort (much to the dismay of the doctor) to giving him a light sedative to calm him down.
The primary resident is going to consult with the team on alternative treatment they can administer when he has these attacks so we don't risk a relapse by using the sedatives. If you recall from previous posts, the sedatives seem to be the culprit in lowering his blood pressure and making him less alert, so we try to avoid them at all costs.
According to the night nurse, Torrey was trying to avoid sedatives all night, but the sleep deprivation just became too much for him. I have comfort in knowing that he realizes what is best for himself, and tries his hardest to be a good patient.
Once he calmed down enough to take a nap, he seemed to do ok. He still didn't seem quite right this evening when I visited, but the nurse said the priority tonight will be to get him to sleep. So, she closed the door to his room to give him some quiet, and I rubbed his forehead until he fell asleep. I sat there for a while to watch over him, and he only woke up briefly a couple of times.
The nurse intended on bothering him as little as possible tonight to ensure he gets some steady sleep.
His white blood count was down a bit today; he was temporarily taken off antibiotics to see how his body reacts to this. He is still on a low dose of the blood pressure meds, and he had a break from dialysis today.
His dialysis will start again tomorrow, but they want to also ensure they squeeze in some physical therapy which cannot take place during the dialysis treatment. We are eager to get him writing so he can communicate better. His range of motion seems to have improved despite the sleep deprivation. He can reach up high enough to touch his face - we just have to make sure that during his 'hazy' times that he doesn't try to pull out the breathing tube. So far he hasn't grabbed a hold of it too many times.
Thalia seemed very happy to have the extra time with me this morning; she had a meltdown after school today about not being able to visit Torrey, but when I suggested she draw a picture of him in the hospital, she calmed right down and got to work. This was a suggestion that the social worker had made. She's made him some get well cards and done other projects, but I was amazed at how accurate her drawing was. She is obviously picking up and absorbing much more than we thought.
I'll be making an early phone call tomorrow to Torrey's night nurse to see how he slept overnight. If I have time, I'll update the blog with how he did.
Hope you all are having a wonderful weekend.
- Monica
Thursday, June 12, 2008
Sarcasm to the 10th degree
Unfortunately, Torrey's white blood count was back up to 22,000 today.
So, we are not on a downward trend as we hoped.
The good news is that this spike was not accompanied by a fever or any other issues.
So, the doctors are not too concerned about this, and are continuing with the current treatments.
He had dialysis again today to take off some fluid, and his blood pressure was fine (they have kept him on the blood pressure meds, but are trying to wean him bit by bit).
His breathing is also much better, and they are still trying to wean him from the breathing tube. He is very anxious to get rid of it, so hopefully we have no further setbacks in that arena.
He was extremely alert today, and very sarcastic and obnoxious.
It got to the point where I told him I was just going to sit in the chair away from his bed until he shaped up.
He laid there for about 10 minutes in what looked to be deep thought, and then finally motioned me over and asked me to rub his forehead. He was much better behaved after that.
I guess time-outs also work with adults!
His range of motion is really good now. He has to wear special boots for his feet for a few hours each day. He hates this, so the nurse told him what exercises he needed to do in lieu of wearing the boots. I actually saw him doing these exercises this evening, so I know he is becoming more rational.
He is still being very weird about non-family visitors. I can't get him to respond very well when the subject comes up.....but, my feeling is that once the breathing tube is out, I can get a much better sense of where he is mentally and emotionally. Hopefully at that point he'll be happy to have the company.
This week has been very emotionally draining, so you can imagine how relieved I am to have him strong again.
Thalia has been home for less than 48 hours, and I am starting to notice some behavioral changes. She gets really freaked out at things that never bothered her before - she now has a morbid fear of flies and mosquitoes, and starts crying at the drop of a hat. She is putting a lot of pressure on herself to be perfectly behaved, and went on a weird cleaning binge last night that seemed to border OCD.
I contacted the CONCERN folks through BGI today to get a local referral for a child-play therapy specialist. I am also going to speak with the child life therapists at the med center.
I told Thalia about this, and she seems very open to it.
She definitely seems to grasp that what is happening to our family does not necessarily happen to everybody, and that there are people who can help her try to feel better while we go through this.
Her bravery and considerate & loving nature have amazed me through this whole ordeal. I told her last night how proud I am of her, and she replied, "I am so proud of you too Mommy".
Her 'mini-vaca' definitely helped change her focus for a few days, and I am so thankful that she had this worry-free time, but too bad we can't always be on vacation!
I am so looking forward to the day that Torrey is w/o the breathing tube and is back to his old self so Thalia can come to the hospital for a visit. I think that day will bring some much needed healing for all of us.
I received more cards, emails, phone calls, and, of course, comments left on the blog (that I ready religiously each day) this week. I can't thank everyone enough for your support and encouragement. It really helps to keep us going.
Hoping to update this blog with more of Torrey's antics tomorrow! The nurses warned me that the patients who wake up from comas are extremely annoying for several days before they go back to normal. Please pray for me to have the patience! Amy G - I assume you know what I am talking about :) I did tell Torrey today, though, that I am ok if he needs to take some frustration out on me - I'd much rather him being annoying than not be awake.
Have a happy Friday,
Monica
So, we are not on a downward trend as we hoped.
The good news is that this spike was not accompanied by a fever or any other issues.
So, the doctors are not too concerned about this, and are continuing with the current treatments.
He had dialysis again today to take off some fluid, and his blood pressure was fine (they have kept him on the blood pressure meds, but are trying to wean him bit by bit).
His breathing is also much better, and they are still trying to wean him from the breathing tube. He is very anxious to get rid of it, so hopefully we have no further setbacks in that arena.
He was extremely alert today, and very sarcastic and obnoxious.
It got to the point where I told him I was just going to sit in the chair away from his bed until he shaped up.
He laid there for about 10 minutes in what looked to be deep thought, and then finally motioned me over and asked me to rub his forehead. He was much better behaved after that.
I guess time-outs also work with adults!
His range of motion is really good now. He has to wear special boots for his feet for a few hours each day. He hates this, so the nurse told him what exercises he needed to do in lieu of wearing the boots. I actually saw him doing these exercises this evening, so I know he is becoming more rational.
He is still being very weird about non-family visitors. I can't get him to respond very well when the subject comes up.....but, my feeling is that once the breathing tube is out, I can get a much better sense of where he is mentally and emotionally. Hopefully at that point he'll be happy to have the company.
This week has been very emotionally draining, so you can imagine how relieved I am to have him strong again.
Thalia has been home for less than 48 hours, and I am starting to notice some behavioral changes. She gets really freaked out at things that never bothered her before - she now has a morbid fear of flies and mosquitoes, and starts crying at the drop of a hat. She is putting a lot of pressure on herself to be perfectly behaved, and went on a weird cleaning binge last night that seemed to border OCD.
I contacted the CONCERN folks through BGI today to get a local referral for a child-play therapy specialist. I am also going to speak with the child life therapists at the med center.
I told Thalia about this, and she seems very open to it.
She definitely seems to grasp that what is happening to our family does not necessarily happen to everybody, and that there are people who can help her try to feel better while we go through this.
Her bravery and considerate & loving nature have amazed me through this whole ordeal. I told her last night how proud I am of her, and she replied, "I am so proud of you too Mommy".
Her 'mini-vaca' definitely helped change her focus for a few days, and I am so thankful that she had this worry-free time, but too bad we can't always be on vacation!
I am so looking forward to the day that Torrey is w/o the breathing tube and is back to his old self so Thalia can come to the hospital for a visit. I think that day will bring some much needed healing for all of us.
I received more cards, emails, phone calls, and, of course, comments left on the blog (that I ready religiously each day) this week. I can't thank everyone enough for your support and encouragement. It really helps to keep us going.
Hoping to update this blog with more of Torrey's antics tomorrow! The nurses warned me that the patients who wake up from comas are extremely annoying for several days before they go back to normal. Please pray for me to have the patience! Amy G - I assume you know what I am talking about :) I did tell Torrey today, though, that I am ok if he needs to take some frustration out on me - I'd much rather him being annoying than not be awake.
Have a happy Friday,
Monica
Wednesday, June 11, 2008
Good day today
Torrey was much more alert today.
They started dialysis early this morning and focused on filtering the blood over getting out fluid.
This helped get the sedatives out of his body.
He seemed a little down this morning, but seemed to perk up after a visit from my Dad, and was much more responsive by this evening.
He is still on blood pressure medicine, but luckily there was no repeat of last night.
His respiratory rate was good all day, so that was a relief.
The White Blood Cell scan revealed that the cells are focused on his lungs and a small area of his stomach. This is where his infections are likely to be.
Since they had already found blood in his lungs, they assumed that there was a 'hidden' infection in the lungs anyway, and changed his antibiotics accordingly. As a result, his white blood count was down to 15,000 today - the lowest it had been since he was admitted.
Normal is anything under 11,000. We are praying it continues to go down, as this number has been as low as 18,000 in the past, but spiked back up into the twenties.
Torrey is getting physical therapy tomorrow to help him re-learn how to write so he can communicate better with us. He is able to give a 'thumbs up' sign, but had trouble using a virtual keyboard to spell out messages. I assume this is due to his haziness.
Thalia has just returned from a 'mini-vacation' with friends.
She really enjoyed her time there, but was happy to be home.
I think the distraction did her well, as she has been very emotionally affected by all the comings and goings in our house. It has been difficult for her to say goodbye to Torrey's Dad each week, and my brother.
My brother, in fact, is leaving his job in LA to move in with us temporarily. He was planning to leave in a month's time anyway to pursue something more in-tune with his skills and interests, but decided that Thalia (us) needed him more right now. You can only imagine how blessed we feel that he is making this sacrifice to give Thalia more stability, and, of course, provide support (though we know we can always call in the calvary of friends for that too).
The rest of us are just so happy that Torrey seems back to making progress. Hoping to close out this week on a high :)
Regards,
Monica
They started dialysis early this morning and focused on filtering the blood over getting out fluid.
This helped get the sedatives out of his body.
He seemed a little down this morning, but seemed to perk up after a visit from my Dad, and was much more responsive by this evening.
He is still on blood pressure medicine, but luckily there was no repeat of last night.
His respiratory rate was good all day, so that was a relief.
The White Blood Cell scan revealed that the cells are focused on his lungs and a small area of his stomach. This is where his infections are likely to be.
Since they had already found blood in his lungs, they assumed that there was a 'hidden' infection in the lungs anyway, and changed his antibiotics accordingly. As a result, his white blood count was down to 15,000 today - the lowest it had been since he was admitted.
Normal is anything under 11,000. We are praying it continues to go down, as this number has been as low as 18,000 in the past, but spiked back up into the twenties.
Torrey is getting physical therapy tomorrow to help him re-learn how to write so he can communicate better with us. He is able to give a 'thumbs up' sign, but had trouble using a virtual keyboard to spell out messages. I assume this is due to his haziness.
Thalia has just returned from a 'mini-vacation' with friends.
She really enjoyed her time there, but was happy to be home.
I think the distraction did her well, as she has been very emotionally affected by all the comings and goings in our house. It has been difficult for her to say goodbye to Torrey's Dad each week, and my brother.
My brother, in fact, is leaving his job in LA to move in with us temporarily. He was planning to leave in a month's time anyway to pursue something more in-tune with his skills and interests, but decided that Thalia (us) needed him more right now. You can only imagine how blessed we feel that he is making this sacrifice to give Thalia more stability, and, of course, provide support (though we know we can always call in the calvary of friends for that too).
The rest of us are just so happy that Torrey seems back to making progress. Hoping to close out this week on a high :)
Regards,
Monica
Tuesday, June 10, 2008
Panic Attacks
The only drawback to being awake is that Torrey is now suffering from panic attacks.
Last night, the line he has 'installed' in his body to administer his dialysis was leaking blood, which agitated him quite a bit. His respiratory rate was high again during the night.
Then, this afternoon, he was given a full-body white blood cell scan that apparently is very taxing for anyone who is claustrophobic, let alone someone that is on a breathing tube with a million different 'probes' in their body.
He had a severe panic attack during this procedure, which forced doctors to give him a sedative to calm him down so they could finish.
The sedative, in turn, caused his blood pressure to go way down. They were able to get it under control with medication, but the arterial line that is used to constantly monitor his blood pressure had been somehow broken, so they had to re-insert it...this took over an hour and involved yet another invasive procedure. This line is extremely important, though, because they need to be able to closely monitor his blood pressure at all times.
Luckily, the sedative helped keep him from feeling much of the procedure, but b/c he has had a few rough nights, they've had to give him sedatives for the past 3 days; this is not good b/c it stays in his body much longer than normal due to his liver problems.
I am hoping they can hold off on pain meds or sedatives for a few days as we risk him slipping into another coma. He was very sleepy this evening (and not as alert even during the day), that I worry we can have yet another set back.
Hopefully we will have the white blood cell scan results tomorrow so the doctors can better treat his infections. Apparently there are some bacterium in hospitals that can be very resistant to antibiotics, usually ones that breed in the various 'lines' they have to put in him to administer various treatments.
Am hoping to have a good 'game plan' update for you tomorrow, once the doctors have the information they need from the scan.
Lots of Love,
Monica
Last night, the line he has 'installed' in his body to administer his dialysis was leaking blood, which agitated him quite a bit. His respiratory rate was high again during the night.
Then, this afternoon, he was given a full-body white blood cell scan that apparently is very taxing for anyone who is claustrophobic, let alone someone that is on a breathing tube with a million different 'probes' in their body.
He had a severe panic attack during this procedure, which forced doctors to give him a sedative to calm him down so they could finish.
The sedative, in turn, caused his blood pressure to go way down. They were able to get it under control with medication, but the arterial line that is used to constantly monitor his blood pressure had been somehow broken, so they had to re-insert it...this took over an hour and involved yet another invasive procedure. This line is extremely important, though, because they need to be able to closely monitor his blood pressure at all times.
Luckily, the sedative helped keep him from feeling much of the procedure, but b/c he has had a few rough nights, they've had to give him sedatives for the past 3 days; this is not good b/c it stays in his body much longer than normal due to his liver problems.
I am hoping they can hold off on pain meds or sedatives for a few days as we risk him slipping into another coma. He was very sleepy this evening (and not as alert even during the day), that I worry we can have yet another set back.
Hopefully we will have the white blood cell scan results tomorrow so the doctors can better treat his infections. Apparently there are some bacterium in hospitals that can be very resistant to antibiotics, usually ones that breed in the various 'lines' they have to put in him to administer various treatments.
Am hoping to have a good 'game plan' update for you tomorrow, once the doctors have the information they need from the scan.
Lots of Love,
Monica
Monday, June 9, 2008
Additional Results
Torrey had a bit of a rough night, but pulled through ok.
Turns out he has bleeding in part of his airway in the lungs.
This is not life-threatening, and is caused by the liver disease; there is no treatment, and this will set him back on being able to breathe on his own, and explains why he has had some respiratory issues lately.
They hope it will only set him back a couple of days.
He is still alert, but more tired than he was a couple of days ago, so we aren't pushing him too much to try and answer questions. They had to give him some pain meds last night (he has been so good about not asking for them), which unfortunately will stay in his body for a longer than normal period, causing him to be more sleepy than usual. It doesn't seem like there is any imminent danger of him falling back into a coma.
After having radiology thoroughly review the latest CT Scan and ultrasound, the doctors have communicated that his liver is very enlarged/fatty, not completely cirrhosized as we had been told at Mercy.
In speaking with the liver specialists last week, they feel that Torrey likely has a condition such as Hemochromatosis, but in his current condition, they cannot accurately test for this. Luckily, enlarged/fatty livers are much more likely to rejuvenate - more so than a cirrhosized liver.
We are still taking this day-by-day, as they have yet to isolate what is causing his white blood count to be high. The liver will not start functioning until the infections are cleared, so they are doing a 'white blood count' scan that will hopefully show them exactly where in the body the white blood cells are clinging.
Despite the fact that the doctors are realistic with us every morning (which usually comes in the form of a grim picture), I want to underscore the fact that they have been wonderful in trying every means possible to get Torrey well.
They have even gone above the call of duty by asking me all about Thalia and making me feel like I am the best wife on earth. Knowing that they are very busy on their 30-hour shifts, and the fact that nurturing is usually doled out by the nurses, this means a lot to me.
For those of you who witnessed the treatment I received at Mercy Folsom for those two first horrible days, you fully understand the importance of this. Had it not been for you, testifying to Torrey's character and habits, I don't believe he would be alive today.
Thank God for the UCD Med Center, and their wonderful doctors and nurses.
And thank God for our wonderful family and friends, who have been instrumental in lifting our spirits, and pulling Torrey out of his coma.
Lots of Love,
Monica
Turns out he has bleeding in part of his airway in the lungs.
This is not life-threatening, and is caused by the liver disease; there is no treatment, and this will set him back on being able to breathe on his own, and explains why he has had some respiratory issues lately.
They hope it will only set him back a couple of days.
He is still alert, but more tired than he was a couple of days ago, so we aren't pushing him too much to try and answer questions. They had to give him some pain meds last night (he has been so good about not asking for them), which unfortunately will stay in his body for a longer than normal period, causing him to be more sleepy than usual. It doesn't seem like there is any imminent danger of him falling back into a coma.
After having radiology thoroughly review the latest CT Scan and ultrasound, the doctors have communicated that his liver is very enlarged/fatty, not completely cirrhosized as we had been told at Mercy.
In speaking with the liver specialists last week, they feel that Torrey likely has a condition such as Hemochromatosis, but in his current condition, they cannot accurately test for this. Luckily, enlarged/fatty livers are much more likely to rejuvenate - more so than a cirrhosized liver.
We are still taking this day-by-day, as they have yet to isolate what is causing his white blood count to be high. The liver will not start functioning until the infections are cleared, so they are doing a 'white blood count' scan that will hopefully show them exactly where in the body the white blood cells are clinging.
Despite the fact that the doctors are realistic with us every morning (which usually comes in the form of a grim picture), I want to underscore the fact that they have been wonderful in trying every means possible to get Torrey well.
They have even gone above the call of duty by asking me all about Thalia and making me feel like I am the best wife on earth. Knowing that they are very busy on their 30-hour shifts, and the fact that nurturing is usually doled out by the nurses, this means a lot to me.
For those of you who witnessed the treatment I received at Mercy Folsom for those two first horrible days, you fully understand the importance of this. Had it not been for you, testifying to Torrey's character and habits, I don't believe he would be alive today.
Thank God for the UCD Med Center, and their wonderful doctors and nurses.
And thank God for our wonderful family and friends, who have been instrumental in lifting our spirits, and pulling Torrey out of his coma.
Lots of Love,
Monica
Sunday, June 8, 2008
More alert today
Despite yesterday's drama, Torrey is much more alert today and has more energy.
He is very emotional, but seems to be getting a bit more logical.
He is still too weak to be able to write any messages, and it will likely take a bit longer to get him off of his breathing tube.
But he is doing his best to improve.
Medically, he still has raging infections that they are not sure how to pinpoint.
The CT Scan ruled out many conditions, so right now, everything is pointing to the gallbladder; but, it is very difficult for them to justify doing anything to the gallbladder w/o proper evidence as they still cannot see it.
His blood is still not clotting properly, so doing anything invasive is still very risky.
He is getting a break from dialysis today; they continue to have to give him meds to keep his blood pressure under control.
I'll be heading back to the hospital later this evening, and should have more info on some additional procedures that were ordered today to try to pinpoint the infections.
Regards,
Monica
He is very emotional, but seems to be getting a bit more logical.
He is still too weak to be able to write any messages, and it will likely take a bit longer to get him off of his breathing tube.
But he is doing his best to improve.
Medically, he still has raging infections that they are not sure how to pinpoint.
The CT Scan ruled out many conditions, so right now, everything is pointing to the gallbladder; but, it is very difficult for them to justify doing anything to the gallbladder w/o proper evidence as they still cannot see it.
His blood is still not clotting properly, so doing anything invasive is still very risky.
He is getting a break from dialysis today; they continue to have to give him meds to keep his blood pressure under control.
I'll be heading back to the hospital later this evening, and should have more info on some additional procedures that were ordered today to try to pinpoint the infections.
Regards,
Monica
Saturday, June 7, 2008
Doctor Gloom Said There Would Be Days Like This....
This morning was a 2-hour roller coaster as Torrey's blood pressure dropped dramatically during his dialysis treatment. We had been warned that this is a risk to such a treatment, but so far they had been able to control it reasonably well during his previous treatments.
They ended up having to discontinue the dialysis until his blood pressure could stabilize.
As they were doing so, Torrey became weaker and weaker, and I had to continually try to keep him awake as the nurses called in the doctors to decide on the best course of action. After what felt like an eternity, they decided to insert a 'central line' through his neck in order to administer special meds that would better control the blood pressure.
The insertion of the central line caused him quite a bit of grief, which actually ended up resulting in his blood pressure rising to a normal level;
Once he calmed down, it started to drop again, but the medicine they gave him through the central line did its job well.
Anyway, they were able to continue his dialysis (a full 8 hours) with no incident, but he was definitely much weaker today, and therefore didn't make much progress with movement.
He will be getting a CT scan tonight of his stomach (since the nuclear scan wasn't clear enough to determine what is causing his white blood count to continue to be up), and they did an ultra-sound of his stomach today as well; though the by-the-book ultrasound tech did not reveal anything she observed. We'll have to wait for results on Monday, but hopefully the doctors will have the results of the CT Scan by tomorrow's rounds.
When I left Torrey tonight, he was resting well; vitals looked good.
Hoping tomorrow morning will be much different!
Hope you all are having a great weekend,
Monica
They ended up having to discontinue the dialysis until his blood pressure could stabilize.
As they were doing so, Torrey became weaker and weaker, and I had to continually try to keep him awake as the nurses called in the doctors to decide on the best course of action. After what felt like an eternity, they decided to insert a 'central line' through his neck in order to administer special meds that would better control the blood pressure.
The insertion of the central line caused him quite a bit of grief, which actually ended up resulting in his blood pressure rising to a normal level;
Once he calmed down, it started to drop again, but the medicine they gave him through the central line did its job well.
Anyway, they were able to continue his dialysis (a full 8 hours) with no incident, but he was definitely much weaker today, and therefore didn't make much progress with movement.
He will be getting a CT scan tonight of his stomach (since the nuclear scan wasn't clear enough to determine what is causing his white blood count to continue to be up), and they did an ultra-sound of his stomach today as well; though the by-the-book ultrasound tech did not reveal anything she observed. We'll have to wait for results on Monday, but hopefully the doctors will have the results of the CT Scan by tomorrow's rounds.
When I left Torrey tonight, he was resting well; vitals looked good.
Hoping tomorrow morning will be much different!
Hope you all are having a great weekend,
Monica
Friday, June 6, 2008
More steps forward..
Torrey continues to open his eyes and respond to basic questions.
He is moving his arms much more now, can wiggle his toes, etc.
They hope to remove the breathing tube by Sunday, and have taken some measures to get him to breathe more on his own.
His labs are starting to look better, though there is still a major concern around his white blood count, and his low-grade temperatures that occur on a near-daily basis.
His nuclear scan came back 'inconclusive'...they are simply unable to see inside well enough to know what may be lurking in his gallbladder, or confirm whether he has issues with his pancreas.
They are thinking of trying again in a few days.
They did an ultrasound of his legs today to look for any blood clots. They are not sure how they would treat them if he did have any, but at least they would know what is causing his WBC to be so high.
He had a rest from dialysis today, but will likely start up again tomorrow.
Torrey did not respond well to the nourishment they were giving him, so they've put a feeding tube through his nose that goes directly to the intestine in hopes that he responds to this better.
So, still seeing good progress.
Can't wait to be able to talk to him.
Now that he is awake, I find myself on another emotional roller coaster.
I want to make sure he is as comfortable as possible, and I notice myself bugging the nurses more about every little thing (they don't seem to mind).
I also try to make sure the doctors are not in his room when they give me the daily reminder of how sick he is, and how 'he could still go at any time'.
It has been great to be able to tell Thalia about Torrey's responses. She knew he had been 'resting' for a long time, but is still obviously unaware of the gravity of his condition.
She especially got a kick out of hearing that her daddy didn't want me in the room yesterday. We told her he was teasing me, and making funny faces at me and it was cracking her up.
Off to the hospital now for the 'night shift'. Will update tonight if there are any significant changes.
Before I sign-off, I just want to express my wholehearted gratitude once again to all of the contributions, emails, voicemails, cards, and comments you all have made this week. I apologize for not being more speedy with the thank-yous. Needless to say I am overwhelmed with emotion and gratitude at your generosity. Your love and encouragement keeps us strong.
Regards,
Monica
He is moving his arms much more now, can wiggle his toes, etc.
They hope to remove the breathing tube by Sunday, and have taken some measures to get him to breathe more on his own.
His labs are starting to look better, though there is still a major concern around his white blood count, and his low-grade temperatures that occur on a near-daily basis.
His nuclear scan came back 'inconclusive'...they are simply unable to see inside well enough to know what may be lurking in his gallbladder, or confirm whether he has issues with his pancreas.
They are thinking of trying again in a few days.
They did an ultrasound of his legs today to look for any blood clots. They are not sure how they would treat them if he did have any, but at least they would know what is causing his WBC to be so high.
He had a rest from dialysis today, but will likely start up again tomorrow.
Torrey did not respond well to the nourishment they were giving him, so they've put a feeding tube through his nose that goes directly to the intestine in hopes that he responds to this better.
So, still seeing good progress.
Can't wait to be able to talk to him.
Now that he is awake, I find myself on another emotional roller coaster.
I want to make sure he is as comfortable as possible, and I notice myself bugging the nurses more about every little thing (they don't seem to mind).
I also try to make sure the doctors are not in his room when they give me the daily reminder of how sick he is, and how 'he could still go at any time'.
It has been great to be able to tell Thalia about Torrey's responses. She knew he had been 'resting' for a long time, but is still obviously unaware of the gravity of his condition.
She especially got a kick out of hearing that her daddy didn't want me in the room yesterday. We told her he was teasing me, and making funny faces at me and it was cracking her up.
Off to the hospital now for the 'night shift'. Will update tonight if there are any significant changes.
Before I sign-off, I just want to express my wholehearted gratitude once again to all of the contributions, emails, voicemails, cards, and comments you all have made this week. I apologize for not being more speedy with the thank-yous. Needless to say I am overwhelmed with emotion and gratitude at your generosity. Your love and encouragement keeps us strong.
Regards,
Monica
Thursday, June 5, 2008
More responses
Okay, Torrey has indicated that the only person he wants with him right now is his dad.
I, of course, am still with him, but the nurse said he will be illogical for the first couple of days of his wake-up process.
I'd like to hold off on any non-family visits until he gets a bit more clear.
He is very strong in his responses, and gets visibly upset when he doesn't like something.
This is very normal, so we are over the moon with this latest development.
Once he gets through this haziness, I am very confident he'll want to see you all again.
My laptop is running out of battery, so am signing off for now....will update you all again shortly.
Thanks,
Monica
Wednesday, June 4, 2008
Contact has been Initiated!!!
A couple of things before I get to the best news:
1. Torrey is getting a nuclear scan tomorrow to check for any obstructions in his gallbladder; According to the doctors, his liver is still 'angry', but they don't know at what. So, they are hoping the nuclear scan will help them locate the culprit - something such as an obstructed gallbladder.
2. Torrey's lungs were looking better this morning; they opted to give him a rest from dialysis today, but expect to start again tomorrow.
Great news! Torrey opened his eyes much more this evening - for as long as 15 minutes.
He was able to 'nod' when they asked him if his name is Torrey Ward.
And he shook his head 'no', when the nurse asked him if he was in any pain.
That alone made me feel so much better - I was really worried that waking up would be very traumatic for him. And it comforted me to know that the nurses are thinking of his comfort first, to ensure the wake-up process is as painless as possible; still, the longer he is off any sedative or pain killers, the quicker he will wake up.
I know we still have a long way to go, and I know it will be no picnic for Torrey once he does fully wake up, but we'll cross that bridge when we come to it; hopefully tomorrow he will respond to more questions.
I could swear when I said goodbye/goodnight to him as we were leaving, that a little scowl appeared on his forehead. We stayed a few extra minutes until the scowl subsided, and I set the TV to A&E in hopes that 'The Deadliest Catch', or 'The First 48' would come on later for him.
Let's hope he can watch some b-ball tomorrow!
If we can hold off on any visits until the afternoon, that would be great (Jen O, this does not apply to you since you won't be able to come back to the ICU anyway). I am hoping tomorrow morning to ask Torrey if he is ok with his friends visiting.
As you all know, Torrey is a very self-conscious person. I would hope that he is open to seeing you all, especially since you all have been so instrumental in getting us to this point; but, in his haziness, I am afraid he may revert back to being embarrassed or self-conscious, and therefore not try as hard to wake-up if non-family members are in his room.
If he isn't responding at all to this question, Or, if he responds positively, then I would like to continue with visitors....it helps keep my spirits up to be able to talk about his progress in person and I know it helps Torrey progress with is wake-up process.
So, I am going to bring my laptop to the hospital tomorrow, and will update this blog as early as possible, indicating whether visitation can continue; no worries for anyone who may stop by in the morning before reading this entry.....
I am so wired now I can't even sleep!
Here's hoping for more great news tomorrow!
BTW, Michele N - Thalia is all set for our plan. She is already counting down the days.
-Monica
1. Torrey is getting a nuclear scan tomorrow to check for any obstructions in his gallbladder; According to the doctors, his liver is still 'angry', but they don't know at what. So, they are hoping the nuclear scan will help them locate the culprit - something such as an obstructed gallbladder.
2. Torrey's lungs were looking better this morning; they opted to give him a rest from dialysis today, but expect to start again tomorrow.
Great news! Torrey opened his eyes much more this evening - for as long as 15 minutes.
He was able to 'nod' when they asked him if his name is Torrey Ward.
And he shook his head 'no', when the nurse asked him if he was in any pain.
That alone made me feel so much better - I was really worried that waking up would be very traumatic for him. And it comforted me to know that the nurses are thinking of his comfort first, to ensure the wake-up process is as painless as possible; still, the longer he is off any sedative or pain killers, the quicker he will wake up.
I know we still have a long way to go, and I know it will be no picnic for Torrey once he does fully wake up, but we'll cross that bridge when we come to it; hopefully tomorrow he will respond to more questions.
I could swear when I said goodbye/goodnight to him as we were leaving, that a little scowl appeared on his forehead. We stayed a few extra minutes until the scowl subsided, and I set the TV to A&E in hopes that 'The Deadliest Catch', or 'The First 48' would come on later for him.
Let's hope he can watch some b-ball tomorrow!
If we can hold off on any visits until the afternoon, that would be great (Jen O, this does not apply to you since you won't be able to come back to the ICU anyway). I am hoping tomorrow morning to ask Torrey if he is ok with his friends visiting.
As you all know, Torrey is a very self-conscious person. I would hope that he is open to seeing you all, especially since you all have been so instrumental in getting us to this point; but, in his haziness, I am afraid he may revert back to being embarrassed or self-conscious, and therefore not try as hard to wake-up if non-family members are in his room.
If he isn't responding at all to this question, Or, if he responds positively, then I would like to continue with visitors....it helps keep my spirits up to be able to talk about his progress in person and I know it helps Torrey progress with is wake-up process.
So, I am going to bring my laptop to the hospital tomorrow, and will update this blog as early as possible, indicating whether visitation can continue; no worries for anyone who may stop by in the morning before reading this entry.....
I am so wired now I can't even sleep!
Here's hoping for more great news tomorrow!
BTW, Michele N - Thalia is all set for our plan. She is already counting down the days.
-Monica
Tuesday, June 3, 2008
Eyes Open, Eyes Close
During 'rounds' this morning, Torrey's primary resident doctor gave us more good news.
Torrey opened his eyes on command, for a brief period.
The attending (aka doc gloom) was very pleased with this and gave me the 'thumbs up' sign.
He has been awesome including me as part of the 'team' each morning, asking for my feedback and explaining the latest developments.
With more visits from the Franklin crowd today, Torrey opened his eyes for his ex-coworkers, sometimes on command, and made a few movements, and more facial expressions.
Based on what I've heard from others who have been through this with their loved ones, this will continue to occur until he finally wakes up for good.
So, needless to say, the visits have been working. I cannot wait for the day to be able to talk with him so he can see first-hand how many folks love and support him.
A few other changes to report - Torrey does have pneumonia now and the infections are still there. He had some oxygen 'issues' with his breathing, and they are getting concerned about that. May have thyroid issues which they can't treat them.
But hopefully as he wakes up he can get stronger to battle off these conditions.
A few of you have suggested I also use this blog to keep folks updated on how me and Thalia are doing.
I myself, am doing well. I am getting more sleep and taking longer breaks to be with Thalia and run those errands that only I can do (banking, school stuff, etc.). I feel strong, though admittedly I am still trying to comprehend all of this, like many of you are.
Thalia is also doing well. She is back in her regular routine now, but does express her sadness over not being able to see her daddy. Obviously we have kept many details from her, but I believe at some level she grasps the gravity of the situation, but she makes it a point to be on her best behavior...even eating her fruit and veggies with no complaints!
I have really enjoyed reading your comments - please keep them coming :)
I have received some very heart-felt emails and voicemails over the past two days - thank you so much for all of the encouragement. I've said it before and I'll say it again - you are all truly amazing.
Regards,
Monica
p.s. Theresa - my Mom made some awesome breakfast burritos with those fresh eggs! Yummy!
Torrey opened his eyes on command, for a brief period.
The attending (aka doc gloom) was very pleased with this and gave me the 'thumbs up' sign.
He has been awesome including me as part of the 'team' each morning, asking for my feedback and explaining the latest developments.
With more visits from the Franklin crowd today, Torrey opened his eyes for his ex-coworkers, sometimes on command, and made a few movements, and more facial expressions.
Based on what I've heard from others who have been through this with their loved ones, this will continue to occur until he finally wakes up for good.
So, needless to say, the visits have been working. I cannot wait for the day to be able to talk with him so he can see first-hand how many folks love and support him.
A few other changes to report - Torrey does have pneumonia now and the infections are still there. He had some oxygen 'issues' with his breathing, and they are getting concerned about that. May have thyroid issues which they can't treat them.
But hopefully as he wakes up he can get stronger to battle off these conditions.
A few of you have suggested I also use this blog to keep folks updated on how me and Thalia are doing.
I myself, am doing well. I am getting more sleep and taking longer breaks to be with Thalia and run those errands that only I can do (banking, school stuff, etc.). I feel strong, though admittedly I am still trying to comprehend all of this, like many of you are.
Thalia is also doing well. She is back in her regular routine now, but does express her sadness over not being able to see her daddy. Obviously we have kept many details from her, but I believe at some level she grasps the gravity of the situation, but she makes it a point to be on her best behavior...even eating her fruit and veggies with no complaints!
I have really enjoyed reading your comments - please keep them coming :)
I have received some very heart-felt emails and voicemails over the past two days - thank you so much for all of the encouragement. I've said it before and I'll say it again - you are all truly amazing.
Regards,
Monica
p.s. Theresa - my Mom made some awesome breakfast burritos with those fresh eggs! Yummy!
Monday, June 2, 2008
Enouraging Signs
Today at 5:05pm, Torrey very briefly opened his eyes.
This was witnessed by my Dad who had been coincidentally reading his bible at the time.
He briefly looked up and saw Torrey's eyes open. Within 30 seconds they were closed again.
He was in the middle of his dialysis treatment when this happened. The doctors indicate that dialysis is very taxing on a patient; we didn't see any other expressions on his face for the rest of the evening, but I assume he is getting some much needed rest.
Let's hope for more tomorrow.
-Monica
This was witnessed by my Dad who had been coincidentally reading his bible at the time.
He briefly looked up and saw Torrey's eyes open. Within 30 seconds they were closed again.
He was in the middle of his dialysis treatment when this happened. The doctors indicate that dialysis is very taxing on a patient; we didn't see any other expressions on his face for the rest of the evening, but I assume he is getting some much needed rest.
Let's hope for more tomorrow.
-Monica
More dialysis today
Not much change today.
We won't know for a few days whether the steroids worked.
The hope is that they will 'jump-start' his liver.
We saw some movement in his eyelids today when speaking to him.
We are hoping that is a good sign that he may be on his way to waking up.
CT Scans showed that the swelling in his brain is still minor, and not enough to cause damage.
His amonia levels are significantly down, which is a great thing. That is was caused his incoherence that awful Saturday morning. With the somewhat clear CT Scan, and the amonia levels subsiding, there is not much left that they think could be causing his coma, so we keep talking to him, encouraging him to wake up.
He is getting more dialysis today, and likely tomorrow, assuming he continues to respond well to it.
His White Blood Cell count was lower today, but that has been going up and down since he was admitted, so fingers crossed it continues to lower so we know that the infections are subsiding.
Many thanks for the continued comments, thoughts, and prayers.
We won't know for a few days whether the steroids worked.
The hope is that they will 'jump-start' his liver.
We saw some movement in his eyelids today when speaking to him.
We are hoping that is a good sign that he may be on his way to waking up.
CT Scans showed that the swelling in his brain is still minor, and not enough to cause damage.
His amonia levels are significantly down, which is a great thing. That is was caused his incoherence that awful Saturday morning. With the somewhat clear CT Scan, and the amonia levels subsiding, there is not much left that they think could be causing his coma, so we keep talking to him, encouraging him to wake up.
He is getting more dialysis today, and likely tomorrow, assuming he continues to respond well to it.
His White Blood Cell count was lower today, but that has been going up and down since he was admitted, so fingers crossed it continues to lower so we know that the infections are subsiding.
Many thanks for the continued comments, thoughts, and prayers.
Sunday, June 1, 2008
Week One Recap
It has been a week of ups and downs as we all struggle to comprehend what has happened to Torrey.
His liver failure, renal failure, and raging infections had us expecting the worst last Monday.
He has continued to hold on as we've gone through dialysis, plasma, 5 different antibiotics, and a breathing tube to try and get him past the first milestone he needs to attain on the way to recovery.
As of now, his inability to wake-up has doctors concerned, so our focus is to continue to play messages from Thalia, having him listen to sports, and having conversations with him to try and jog any sign of alertness.
So far, we have some grimaces that show on his face in response to pain or agitation, but that is about it.
We had another grim outlook from the doctors this morning, but as far as I am concerned, I am remaining strong and positive for him until he shows me no sign of fight left. I know he would do the same for me, and I don't really have any other way of coping with this.
What continues to amaze me in these dark hours, is the amount of love and support that has come from everybody who knows Torrey. Your prayers, phone calls, emails, gifts for Thalia and visits have helped to keep me, his Dad, and our family strong.
We are so touched and amazed to see how much he has meant to you all - something I never quite realized, though perhaps something that shouldn't have surprised me after all.
I don't think I can even express the gratitude my heart fills with everyday, for everything you all have done.
I will continue to keep this blog updated daily; this will hopefully relieve the burden a bit on my key contacts who have been doing such a great job relaying information.
Feel free to post any comments you'd like me to relay to Torrey.
Kindest Regards,
Monica
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