Wednesday, December 31, 2008
Decisions
So much for a quick stay in the hospital. Tracy now has a ventilator and a feeding tube. The ventilator was difficult to place and Trevor, Hannah and I were totally terrified and crying as the doctors pushed us out of the room and everyone nurses, doctors, aides were in a panic. I will never forget the look of terror on Tracy's face when he realized that he could not breathe. Help me make good decisions.
Reply
Dear Mica:
Thank you for this long and thoughtful e-mail. I share with you the concern we have for Tracy's life - that it should have some dignity and meaning. I wouldn't want it prolonged for the sake of suffering and nothing more. We considered sending him to Strong Memorial Hospital, but when Dr. Evans spoke to Dr. Trawick they appeared to offer nothing in addition to what we are doing. So, despite our earlier enthusiasm about transferring him, we have elected to keep him here in Ithaca. We have added further antibacterial coverage at their advice. We will know soon enough if he is responding.
There is some reason for hope as at present his lungs are affected, but his other organs are holding out. I know he developed a heart rhythm disturbance, but I don't think that reflects more than a reaction to his pneumonia. This also is likely to have contributed to his altered mental state. When I saw him this morning he looked sick from the pneumonia and was unconscious because of the opiates. His recovery depends upon his ability to clear up this pneumonia. He has no reserve and that is my fear - that he may require assistance with breathing. Also, he may need assistance with nutrition as he can't get better if he is so malnourished/catabolic.
Unfortunately, as patients as sick as Tracy have "non-linear" events. As we wait for the pneumonia to recover something else happens unexpectedly (like the pulmonary embolism, pericarditis and the atrial fibrillation). There is no easy way to factor that into formulating his prognosis from this acute illness.
I am encouraged by the 2 weeks of reasonable quality of life he has recently. This appeared out of nowhere and I cannot account for it.
He looked awful when I saw him this morning and my first reaction was like yours. He looked like he was dying. However, I have seen patients get through dark periods like this when the infection is appropriately and aggressively treated. We must expect the unexpected. He may succumb. However, I don't think we are at the stage for hospicare. That may come, but not today.
I am sorry I offer only slivers of hope and nothing more. We can do so much and the rest is up to Tracy's physiology.
Thank you for this long and thoughtful e-mail. I share with you the concern we have for Tracy's life - that it should have some dignity and meaning. I wouldn't want it prolonged for the sake of suffering and nothing more. We considered sending him to Strong Memorial Hospital, but when Dr. Evans spoke to Dr. Trawick they appeared to offer nothing in addition to what we are doing. So, despite our earlier enthusiasm about transferring him, we have elected to keep him here in Ithaca. We have added further antibacterial coverage at their advice. We will know soon enough if he is responding.
There is some reason for hope as at present his lungs are affected, but his other organs are holding out. I know he developed a heart rhythm disturbance, but I don't think that reflects more than a reaction to his pneumonia. This also is likely to have contributed to his altered mental state. When I saw him this morning he looked sick from the pneumonia and was unconscious because of the opiates. His recovery depends upon his ability to clear up this pneumonia. He has no reserve and that is my fear - that he may require assistance with breathing. Also, he may need assistance with nutrition as he can't get better if he is so malnourished/catabolic.
Unfortunately, as patients as sick as Tracy have "non-linear" events. As we wait for the pneumonia to recover something else happens unexpectedly (like the pulmonary embolism, pericarditis and the atrial fibrillation). There is no easy way to factor that into formulating his prognosis from this acute illness.
I am encouraged by the 2 weeks of reasonable quality of life he has recently. This appeared out of nowhere and I cannot account for it.
He looked awful when I saw him this morning and my first reaction was like yours. He looked like he was dying. However, I have seen patients get through dark periods like this when the infection is appropriately and aggressively treated. We must expect the unexpected. He may succumb. However, I don't think we are at the stage for hospicare. That may come, but not today.
I am sorry I offer only slivers of hope and nothing more. We can do so much and the rest is up to Tracy's physiology.
What is our Reality?
Dear Dr. Law,
This is Tracy's wife.
In the last few days Tracy said a few times that he thought he was dying. I of
course have no way to know if he was just confused, just really did not feel
good or if the dying do realize that they are dying. I was hoping at the time
(and still wish to believe) that he was just talking.
When his heart rate returned to normal early this morning, I assumed that we had
got through the worst of it and we would return to some kind of semblance of
normal. He is still very sleepy and not wanting to wake up and no one is really
trying to get him to wake up. I imagine he is quite tired of all that he has
gone through not only these past few days but these past several months. I did
think however that once he woke up and the antibiotics had a chance to work on
the pneumonia that we would indeed go home and I did not see us staying in the
hospital for too long.
The nurse who was on duty throughout the night spoke to me this morning and I am
now no longer all that hopeful. She suggested that I ask about a PICC line to
be able to administer meds and possibly TPN. She also asked what our thoughts
were on ventilators, chest compression and the like. She also said I should ask
someone if he should be transferred to Strong. I got the impression from her
that she did not think he would be coming out of this.
It is my deepest hope and desire that Tracy can continue to live a life with
dignity and joy. It is also my desire that his life not be prolonged if there
is no hope for a future with a quality of life. I am not ready to accept and do
not know that I will ever fully be ready to accept that we have no more options.
But, more than anything I want to do what is right for Tracy.
Tracy views you not only as his doctor but his partner in his health. He has
the greatest respect for you as do I.
I do not understand why that the doctors at Strong seems to be dragging their
feet with regards to the lung transplant. It is possible that some of that is
due to Tracy himself and he not really wanting a lung transplant. He wants to
live but does not want to accept that the transplant is the only option. I can
not tell if Strong is dragging their feet because they do not realize how sick
he is or if a transplant really is not an option for him.
I guess what I am wanting from you is an honest assessment of where we are.
What is your best judgment of what the next few days hold for us? Is there
still reason to hope? Tracy and I are both weary of illness, but I want to
believe there is reason to think that he will get over this hurdle just like he
has his past hurdles. I also want to know if that is not our reality.
Thanks,
Mica
This is Tracy's wife.
In the last few days Tracy said a few times that he thought he was dying. I of
course have no way to know if he was just confused, just really did not feel
good or if the dying do realize that they are dying. I was hoping at the time
(and still wish to believe) that he was just talking.
When his heart rate returned to normal early this morning, I assumed that we had
got through the worst of it and we would return to some kind of semblance of
normal. He is still very sleepy and not wanting to wake up and no one is really
trying to get him to wake up. I imagine he is quite tired of all that he has
gone through not only these past few days but these past several months. I did
think however that once he woke up and the antibiotics had a chance to work on
the pneumonia that we would indeed go home and I did not see us staying in the
hospital for too long.
The nurse who was on duty throughout the night spoke to me this morning and I am
now no longer all that hopeful. She suggested that I ask about a PICC line to
be able to administer meds and possibly TPN. She also asked what our thoughts
were on ventilators, chest compression and the like. She also said I should ask
someone if he should be transferred to Strong. I got the impression from her
that she did not think he would be coming out of this.
It is my deepest hope and desire that Tracy can continue to live a life with
dignity and joy. It is also my desire that his life not be prolonged if there
is no hope for a future with a quality of life. I am not ready to accept and do
not know that I will ever fully be ready to accept that we have no more options.
But, more than anything I want to do what is right for Tracy.
Tracy views you not only as his doctor but his partner in his health. He has
the greatest respect for you as do I.
I do not understand why that the doctors at Strong seems to be dragging their
feet with regards to the lung transplant. It is possible that some of that is
due to Tracy himself and he not really wanting a lung transplant. He wants to
live but does not want to accept that the transplant is the only option. I can
not tell if Strong is dragging their feet because they do not realize how sick
he is or if a transplant really is not an option for him.
I guess what I am wanting from you is an honest assessment of where we are.
What is your best judgment of what the next few days hold for us? Is there
still reason to hope? Tracy and I are both weary of illness, but I want to
believe there is reason to think that he will get over this hurdle just like he
has his past hurdles. I also want to know if that is not our reality.
Thanks,
Mica
Although his heart rate is normal, I am still incredibly concerned. It is still
early in the day, he still seems a bit confused. I was under the impression that
once the heart rate stabalized the confusion would dissipate also. But maybe he
is just tired. All of this has been scary, but I think this time was the worst
so far. I will be happy to see him act a little more like his old self. It
was quite the blow to not only his physical state but both of our emotional well
being since last week he was doing so well and we were really encouraged. I
hope we can get back to where he was last week.
The nurse is not encouraging at all :( What is up with her?
early in the day, he still seems a bit confused. I was under the impression that
once the heart rate stabalized the confusion would dissipate also. But maybe he
is just tired. All of this has been scary, but I think this time was the worst
so far. I will be happy to see him act a little more like his old self. It
was quite the blow to not only his physical state but both of our emotional well
being since last week he was doing so well and we were really encouraged. I
hope we can get back to where he was last week.
The nurse is not encouraging at all :( What is up with her?
Tuesday, December 30, 2008
the beginning of ICU
Tracy's heart rate is down now to the mid 80's pretty much stable there since
3:10 am. It had been around 190. It was kind of interesting that the pulse and
the heart rate were not matching up and both were really jumping around and did
so all night long. It was gradually going down but almost magically at 3 10 it
went down to close to the normal range and both the pulse and heart rate were
the same . So the night nurse thinks we are out of the woods. But where did we
end up on the other side of the woods is what I want to know. The cardiologist
that we saw is the same one when Tracy had his pericarditis episode. He is from
India I think and the first time I met him I thought that he had a shaving
accident with his mustache as one side was really heavy and the other side was
really light. It was the same this time so I guess he likes it like that. That
is just a fun fact.
I don't know that I handled any of this right. I wish I were more like mom who
seems to be better equipped when it comes to crisis. I should have also been
more aware of what was going on. There were signs. Tracy has prescriptions for
oxycontin and oxycodone that I think he was taking too much of. I have since
confiscated them at dispense as written, but the last few nights he was up most
of the night agitated and confused. He was getting angry at me and asking why I
was not helping him and when I asked what exactly he needed he wanted to know
things like what the meaning of life was and what he was made of. I do not have
these answers or not the ones that he wanted. I got really frustrated because I
just really wanted to sleep, to wake up on my own time which I have not done for
months. Another fun fact...none of the lung treatments work for Tracy except
for caffeine. So of all of the advances in medications what works best is
simple coffee. The downside is that he wants coffee right when he wakes up and
that is usually at 5 am. So I was tired and not wanting to be awoken to discuss
that what he was made of and then for him to get annoyed when I thought he meant
his character and not his muscles, bones etc. The confusion has been coming and
going for awhile, but I attributed it to the drugs that he is on. The doctors
everywhere however knew that his pulse was high and even though we asked several
times if we should see a cardiologist no one thought that was necessary. I
sometimes wonder if we have too many doctors or not enough doctors.
Last fact.....the electronic devices that measure heart rate, blood pressure and
pulse are not so great for atrial fibrillation because the screwiness of the
illness causes the electronic devices to not read correctly and it appeared both
at home and at the local PCP that nothing was too far off. To initially
diagnose atrial fibrillation one should do a manual pulse. Heart rate and pulse
rate are generally the same but when the heart is beating wildly out of control
they freqeuntly will not be. Doctors do not like to touch people anymore though.
Not that I am thinking of lawyering up or anything but I do think doctors do
best with uncomplicated cases. Broke bones and the like.
Anyway, now I am just rambling.
o2 sats 100 percent
respiration 23
blood pressure 98/62 ( a little low but that is due to the cardioaversion
medication)
pulse rate and heart rate 82
3:10 am. It had been around 190. It was kind of interesting that the pulse and
the heart rate were not matching up and both were really jumping around and did
so all night long. It was gradually going down but almost magically at 3 10 it
went down to close to the normal range and both the pulse and heart rate were
the same . So the night nurse thinks we are out of the woods. But where did we
end up on the other side of the woods is what I want to know. The cardiologist
that we saw is the same one when Tracy had his pericarditis episode. He is from
India I think and the first time I met him I thought that he had a shaving
accident with his mustache as one side was really heavy and the other side was
really light. It was the same this time so I guess he likes it like that. That
is just a fun fact.
I don't know that I handled any of this right. I wish I were more like mom who
seems to be better equipped when it comes to crisis. I should have also been
more aware of what was going on. There were signs. Tracy has prescriptions for
oxycontin and oxycodone that I think he was taking too much of. I have since
confiscated them at dispense as written, but the last few nights he was up most
of the night agitated and confused. He was getting angry at me and asking why I
was not helping him and when I asked what exactly he needed he wanted to know
things like what the meaning of life was and what he was made of. I do not have
these answers or not the ones that he wanted. I got really frustrated because I
just really wanted to sleep, to wake up on my own time which I have not done for
months. Another fun fact...none of the lung treatments work for Tracy except
for caffeine. So of all of the advances in medications what works best is
simple coffee. The downside is that he wants coffee right when he wakes up and
that is usually at 5 am. So I was tired and not wanting to be awoken to discuss
that what he was made of and then for him to get annoyed when I thought he meant
his character and not his muscles, bones etc. The confusion has been coming and
going for awhile, but I attributed it to the drugs that he is on. The doctors
everywhere however knew that his pulse was high and even though we asked several
times if we should see a cardiologist no one thought that was necessary. I
sometimes wonder if we have too many doctors or not enough doctors.
Last fact.....the electronic devices that measure heart rate, blood pressure and
pulse are not so great for atrial fibrillation because the screwiness of the
illness causes the electronic devices to not read correctly and it appeared both
at home and at the local PCP that nothing was too far off. To initially
diagnose atrial fibrillation one should do a manual pulse. Heart rate and pulse
rate are generally the same but when the heart is beating wildly out of control
they freqeuntly will not be. Doctors do not like to touch people anymore though.
Not that I am thinking of lawyering up or anything but I do think doctors do
best with uncomplicated cases. Broke bones and the like.
Anyway, now I am just rambling.
o2 sats 100 percent
respiration 23
blood pressure 98/62 ( a little low but that is due to the cardioaversion
medication)
pulse rate and heart rate 82
Sunday, December 28, 2008
Letdown
I think all of the 'work' that goes into planning for Christmas was a good thing for me. It takes time to pick the perfect gift for people. To plan a day that can be joyous and fill everyone's needs. Although it is harder as the boys grow older to make the holiday eventful and fun and even harder when we are away from the extended family, the distraction of planning was good. I think everyone feels somewhat of a let down after Christmas. The months of planning, the stores being ready for Christmas since before Halloween and after one morning it is over. Such a change even with shoppers....those picking up last minute stocking stuffers on Christmas Eve are very different people returning gifts on the 26th. Reality comes back on the 26th. My reality has hit hard. The moment I stopped moving the reality and fear came back in. I was able while James and Liz were here to keep my Christmas spirit, to let my kids have a nice holiday. James and Liz are gone, Wesley is at work, Joshua is spending the night with a friend, William is playing a video game and Tracy is in bed. I thought that a few moments of quiet would be a good thing, but I was wrong. I feel frozen, terrified, angry, devastated, disappointed and oh so very tired.
So tomorrow we have to re-focus. We have to get another plan. Any plan. We can pull through one more time. We have been told that if this is GVHD it could just burn itself out. And last week we had hope that it could be happening. These past few days however Tracy loses more mobility and strength almost visibly. I have to watch helplessly as Tracy loses his desire to continue the fight, loses his desire to try and get back to where we were last week and feel the potential we felt he had. Surely God still has a plan? One that would include a quality of life or something to balance out all that he endures - that we endure. Surely things can get better. Tracy has battled chronic illness now for 12 years. He has had 6 different chemotherapy's, the stem cell transplant and now he suffers from the effects of the life saving therapies. How much more can I expect him to take? Or are now Tracy and my prayers very different and to relieve Tracy's pain will be just the beginning of mine?
And it's not just us. I hate going to the hospital. There we have to see so many other families also fighting, equally traumatized and in crisis. How can this be? So many other people also going through what can only be described as torture. How can the cure that people are praying for turn out to also be a life-threatening disease? I hate seeing the parents of children who are suffering the way Tracy is. Those parents are the walking wounded and you can see how hurt they are in their eyes. You can see their pain and how much they wish to take on their child's suffering. How can any of this make sense?
I need to figure out how to get up and do this again tomorrow. How to get Tracy to want to try 'one more time'. I need to figure out how to be positive. Maybe get our team to look for different options or look for different angles. I need some energy to be able to maintain some balance between immersion in medical stuff and being a mother who is not distracted. I need to get some energy, a new plan and a reason to be hopeful.
So tomorrow we have to re-focus. We have to get another plan. Any plan. We can pull through one more time. We have been told that if this is GVHD it could just burn itself out. And last week we had hope that it could be happening. These past few days however Tracy loses more mobility and strength almost visibly. I have to watch helplessly as Tracy loses his desire to continue the fight, loses his desire to try and get back to where we were last week and feel the potential we felt he had. Surely God still has a plan? One that would include a quality of life or something to balance out all that he endures - that we endure. Surely things can get better. Tracy has battled chronic illness now for 12 years. He has had 6 different chemotherapy's, the stem cell transplant and now he suffers from the effects of the life saving therapies. How much more can I expect him to take? Or are now Tracy and my prayers very different and to relieve Tracy's pain will be just the beginning of mine?
And it's not just us. I hate going to the hospital. There we have to see so many other families also fighting, equally traumatized and in crisis. How can this be? So many other people also going through what can only be described as torture. How can the cure that people are praying for turn out to also be a life-threatening disease? I hate seeing the parents of children who are suffering the way Tracy is. Those parents are the walking wounded and you can see how hurt they are in their eyes. You can see their pain and how much they wish to take on their child's suffering. How can any of this make sense?
I need to figure out how to get up and do this again tomorrow. How to get Tracy to want to try 'one more time'. I need to figure out how to be positive. Maybe get our team to look for different options or look for different angles. I need some energy to be able to maintain some balance between immersion in medical stuff and being a mother who is not distracted. I need to get some energy, a new plan and a reason to be hopeful.
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