They're still weening him off of the sedatives. He's definitely starting to open his eyes more and try to move around more. Slowly and surely!! They just did another blood gas, and everything was normal without dialysis!!! He is just doing better by leaps and bounds today! I think back to the news we got on Sunday, and look how far he's come. All of your thoughts and prayers are working!
Love,
Melissa
Friday, January 15, 2010
!!!!!!!!!
Oh my goodness! They're waking him up!!! Might take a few days to ween him off, but they're trying!!
More later when I can think more coherently.
Love,
Melissa
More later when I can think more coherently.
Love,
Melissa
Thursday, January 14, 2010
Calm night and good blood counts
Hi everyone,
We had a very calm night last night. Eric made some improvements on his lungs. They are going to reduce the vent settings today. The doctors are back to hinting at maybe weaning him off the vent, which is soooooooooooooo exciting. Yesterday they were talking about going to a tracheotomy, which is a set up for much longer term breathing support.
Below, I plotted Eric's blood counts over the past month, platelets and white blood cells. When Eric checked into the hospital, his white blood cell count was way too high (over 100,000), and his platelet count was way too low at 5000. The green lines are the four chemo treatments. They were giving Eric something on Dec 11-13 to kill off the WBC, but didn't start the chemo until they had an exact diagnosis on Dec 14. Today, Eric's white blood cells are 5800 (normal range is 5000-10,000) and his platelets are 81,000 (normal range 150,000). Click on the graph to get a bigger image.
Love,
Sara
We had a very calm night last night. Eric made some improvements on his lungs. They are going to reduce the vent settings today. The doctors are back to hinting at maybe weaning him off the vent, which is soooooooooooooo exciting. Yesterday they were talking about going to a tracheotomy, which is a set up for much longer term breathing support.
Below, I plotted Eric's blood counts over the past month, platelets and white blood cells. When Eric checked into the hospital, his white blood cell count was way too high (over 100,000), and his platelet count was way too low at 5000. The green lines are the four chemo treatments. They were giving Eric something on Dec 11-13 to kill off the WBC, but didn't start the chemo until they had an exact diagnosis on Dec 14. Today, Eric's white blood cells are 5800 (normal range is 5000-10,000) and his platelets are 81,000 (normal range 150,000). Click on the graph to get a bigger image.
Love,
Sara
Wednesday, January 13, 2010
Chest Tube
Hi,
Last night, Eric had a small pneumothorax (hole in the lung) at the top of his left lung. It did not cause any problems with his ventilation status; he was still able to oxygenate and release CO2 well. However, it made the swelling go up in his chest, neck, and face. So this morning, they placed a chest tube. They were actually able to place it in the same exact spot where he had a chest tube from his car accident 8 years ago. The doctor said it was really easy to place because of it, since his scar made a nice target. : ) Hopefully, this will help with the swelling and with lowering the pressures required to inflate his lungs (since we're relieving the pressure building up directly outside of his lungs).
Sara's already updated everyone on his latest numbers. I just wanted to add a little clarification on the conversation with the hematologist last night. I think the normal course of therapy would be to give ATRA until his cell counts returned to normal, then only give it intermittently for several more months (approx 2 weeks every month). Patients normally undergo maintenance chemo as well, but I don't know the normal timeline for that. The hematologist was saying last night that they will check his blood for evidence of leukemia, and if there is none, he'll stop the daily dose of ATRA and give it intermittently, which is normal. He did say that he thinks Eric is too sick for more chemo, but we'll see how things pan out. Eric has the capability to surprise them all! We do know that his road to recovery will be long. It will take a while to get him off of the ventilator (they are talking about doing a tracheotomy), and it will take A LOT of physical therapy to build his muscles back up so that he can walk again. He is a very determined person, and I know he will work hard to become more independent again.
I guess for now, we're waiting to hear the results of the blood test. We're hoping for steady steps in the right direction!
Love,
Melissa
Last night, Eric had a small pneumothorax (hole in the lung) at the top of his left lung. It did not cause any problems with his ventilation status; he was still able to oxygenate and release CO2 well. However, it made the swelling go up in his chest, neck, and face. So this morning, they placed a chest tube. They were actually able to place it in the same exact spot where he had a chest tube from his car accident 8 years ago. The doctor said it was really easy to place because of it, since his scar made a nice target. : ) Hopefully, this will help with the swelling and with lowering the pressures required to inflate his lungs (since we're relieving the pressure building up directly outside of his lungs).
Sara's already updated everyone on his latest numbers. I just wanted to add a little clarification on the conversation with the hematologist last night. I think the normal course of therapy would be to give ATRA until his cell counts returned to normal, then only give it intermittently for several more months (approx 2 weeks every month). Patients normally undergo maintenance chemo as well, but I don't know the normal timeline for that. The hematologist was saying last night that they will check his blood for evidence of leukemia, and if there is none, he'll stop the daily dose of ATRA and give it intermittently, which is normal. He did say that he thinks Eric is too sick for more chemo, but we'll see how things pan out. Eric has the capability to surprise them all! We do know that his road to recovery will be long. It will take a while to get him off of the ventilator (they are talking about doing a tracheotomy), and it will take A LOT of physical therapy to build his muscles back up so that he can walk again. He is a very determined person, and I know he will work hard to become more independent again.
I guess for now, we're waiting to hear the results of the blood test. We're hoping for steady steps in the right direction!
Love,
Melissa
Another good night
Hello all,
We had another good day and night yesterday. Eric made some more small improvements. Melissa was able to communicate with Eric as well during the day. Such a great feeling.
We did have a disheartening discussion with the hematologist in the evening. The hematologist told us that he wants to change Eric's cancer treatments away from the normal path due to how sick Eric is. Normally leukemia petitions would get ATRA (vitamin A derivative) daily and then a second chemo treatment. The hematologist said due to Eric's current condition he wants to stop the ATRA for a little bit to give Eric's body a break, and he doesn't want to do the 2nd chemo treatment. This was and still is very upsetting to us. He is slowly making progress daily and that conversation felt like his primary doctor is giving up. We'll see what the hematologist says today.
On a positive note, we were able to reduce the vent settings more last night. Reduced the respiratory rate from 35 to 32 and the PC over PEEP 4o to 34. Another small step in the right direction.
Hoping today brings more small improvements and hopefully a different perspective from the hematologist.
Love,
Sara
We had another good day and night yesterday. Eric made some more small improvements. Melissa was able to communicate with Eric as well during the day. Such a great feeling.
We did have a disheartening discussion with the hematologist in the evening. The hematologist told us that he wants to change Eric's cancer treatments away from the normal path due to how sick Eric is. Normally leukemia petitions would get ATRA (vitamin A derivative) daily and then a second chemo treatment. The hematologist said due to Eric's current condition he wants to stop the ATRA for a little bit to give Eric's body a break, and he doesn't want to do the 2nd chemo treatment. This was and still is very upsetting to us. He is slowly making progress daily and that conversation felt like his primary doctor is giving up. We'll see what the hematologist says today.
On a positive note, we were able to reduce the vent settings more last night. Reduced the respiratory rate from 35 to 32 and the PC over PEEP 4o to 34. Another small step in the right direction.
Hoping today brings more small improvements and hopefully a different perspective from the hematologist.
Love,
Sara
Tuesday, January 12, 2010
Good night, hoping for more progress today
Hi everyone,
Eric had a great night last night. His white blood cells continue to improve. In just 12 hours he doubled his white blood cells from 2200 to 4200. This is excellent (as long as the cells continue to be healthy, normal cells). Eric's platelets are holding as well at 62,000. This is really helping to reduce all the bruising on his arms and legs. Eric's CO2 and pH continue to go in the right direction. Baby steps towards recovery.......
Last night around 3am, Eric was much more awake. He was able to shake his head no when I asked him if he was in pain. He squeezed my hand when I asked him to. I told him it was nice to see him. :) I just can't explain how the little things like that keep us going. He's in there and fighting hard.
The critical care doctors stopped in this morning saying they are going to try to reduce the ventilator settings and the sedation today. We are hoping for a good day today.
Love,
Sara
Eric had a great night last night. His white blood cells continue to improve. In just 12 hours he doubled his white blood cells from 2200 to 4200. This is excellent (as long as the cells continue to be healthy, normal cells). Eric's platelets are holding as well at 62,000. This is really helping to reduce all the bruising on his arms and legs. Eric's CO2 and pH continue to go in the right direction. Baby steps towards recovery.......
Last night around 3am, Eric was much more awake. He was able to shake his head no when I asked him if he was in pain. He squeezed my hand when I asked him to. I told him it was nice to see him. :) I just can't explain how the little things like that keep us going. He's in there and fighting hard.
The critical care doctors stopped in this morning saying they are going to try to reduce the ventilator settings and the sedation today. We are hoping for a good day today.
Love,
Sara
Monday, January 11, 2010
Monday Morning
We just saw the majority of the doctors this morning, and everyone sounds pretty optomistic! Obviously, we still have a ways to go, but his trends seem to be going in the right direction.
He is back on the 24 hr dialysis machine, since his CO2 numbers started increasing again last night. It seems to be helping, and no one really knows why. I don't really care if they know why, just as long as it helps! They didn't let the CO2 get too high before they decided to put him on the machine, so that is good too. We're waiting for the next few blood gases to make sure his numbers stay where they are supposed to be. The last ones increased very slightly, so we're hoping that they are basically the same and not the start of a new trend. He's getting the 2nd of 3 doses of a very strong anti-inflammatory steroid today, so hopefully this will help the lungs as well. The downside to this treatment is that the steriods will suppress his immune system, which is why they waited until his numbers started returning before giving it to him. We're hoping that the broad range antibiotics and antifungals will continue to work well, and that these steriods will not cause a problem.
His blood counts from 2 am showed that he has 2200 white blood cells! All of these are the normal, healthy cells. This is also very promising, and we are so happy!! We won't know for sure if he is in remission until they do another bone marrow biopsy, but so far things are looking the way we want them to. We haven't found out yet when they are planning on doing the biopsy, but my guess is that they will wait till his numbers have stabilized a bit more. We were told a couple days ago that there are not any other options for him if his leukemia is still present, since his body is so weak right now. Obviously, we are all very anxious to hear that he is in remission and continuing to do better. We are all praying very hard for him that his leukemia is gone, and so far, things are looking very promising. He's come such a long way and gone through so much, and I know he will not give up fighting. A part of me knows that he'll eventually wake up and ask us why we were all worrying so much. He has so many good people pulling for him, and I know that is helping as well! (Plus, we've been playing tuba music for him to entice him to get better. It turns out that a couple of the guys on the lift team are tuba players and graciously burned us a few more cds. You KNOW that has to be a good sign!)
I hope that today continues to go well. Everyday brings us another day closer to recovery!
Love,
Melissa
He is back on the 24 hr dialysis machine, since his CO2 numbers started increasing again last night. It seems to be helping, and no one really knows why. I don't really care if they know why, just as long as it helps! They didn't let the CO2 get too high before they decided to put him on the machine, so that is good too. We're waiting for the next few blood gases to make sure his numbers stay where they are supposed to be. The last ones increased very slightly, so we're hoping that they are basically the same and not the start of a new trend. He's getting the 2nd of 3 doses of a very strong anti-inflammatory steroid today, so hopefully this will help the lungs as well. The downside to this treatment is that the steriods will suppress his immune system, which is why they waited until his numbers started returning before giving it to him. We're hoping that the broad range antibiotics and antifungals will continue to work well, and that these steriods will not cause a problem.
His blood counts from 2 am showed that he has 2200 white blood cells! All of these are the normal, healthy cells. This is also very promising, and we are so happy!! We won't know for sure if he is in remission until they do another bone marrow biopsy, but so far things are looking the way we want them to. We haven't found out yet when they are planning on doing the biopsy, but my guess is that they will wait till his numbers have stabilized a bit more. We were told a couple days ago that there are not any other options for him if his leukemia is still present, since his body is so weak right now. Obviously, we are all very anxious to hear that he is in remission and continuing to do better. We are all praying very hard for him that his leukemia is gone, and so far, things are looking very promising. He's come such a long way and gone through so much, and I know he will not give up fighting. A part of me knows that he'll eventually wake up and ask us why we were all worrying so much. He has so many good people pulling for him, and I know that is helping as well! (Plus, we've been playing tuba music for him to entice him to get better. It turns out that a couple of the guys on the lift team are tuba players and graciously burned us a few more cds. You KNOW that has to be a good sign!)
I hope that today continues to go well. Everyday brings us another day closer to recovery!
Love,
Melissa
Sunday, January 10, 2010
Latest Blood Gas Concentrations
Eric's latest blood gases:
pCO2: 74 (down from 90 this morning, normal range 35-45)
pO2: fine (don't remember what the actual number was)
pH: 7.24 (up from 7.11 this morning, normal is 7.35 - 7.45)
These are the first results after the changes they made to the ventilator about an hour and a half ago. Plus, he started the fast dialysis, which takes 3-4 hours. We're hoping that the numbers keep going in the right direction.
White blood cells are now at 1300, and they look normal! I'm beginning to have mixed feelings about these cells. We need them to survive, but they could potentially cause problems in the lungs (might be why he's having trouble this morning) due to the cells attacking the infection that is already there. This can cause more inflammation in the lungs, making it harder for gas exchange and the release of CO2.
We're not out of this yet and need all the help we can get.
Love,
Melissa
pCO2: 74 (down from 90 this morning, normal range 35-45)
pO2: fine (don't remember what the actual number was)
pH: 7.24 (up from 7.11 this morning, normal is 7.35 - 7.45)
These are the first results after the changes they made to the ventilator about an hour and a half ago. Plus, he started the fast dialysis, which takes 3-4 hours. We're hoping that the numbers keep going in the right direction.
White blood cells are now at 1300, and they look normal! I'm beginning to have mixed feelings about these cells. We need them to survive, but they could potentially cause problems in the lungs (might be why he's having trouble this morning) due to the cells attacking the infection that is already there. This can cause more inflammation in the lungs, making it harder for gas exchange and the release of CO2.
We're not out of this yet and need all the help we can get.
Love,
Melissa
Prayers Needed
We found out this morning that Eric's lungs are getting worse. They are no longer inflating and deflating properly, causing his CO2 to increase drastically. They are worried that if this continues to increase, his pH will continue to drop. This will eventually cause his cardiovascular system to stop working properly. They made a few changes to the ventilator, but they are at the limit of what they can do. They are starting stronger steroids for his lungs, but the overall message this morning was that this is not looking good. Please keep praying. We really need them right now.
Love,
Melissa
Love,
Melissa
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