Good morning!
When I arrived at the hospital this morning, I found out that Eric was initiating every breath on his own! His oxygen setting on the vent has been reduced to 30%, which is as low as they can go. The vent still helps push some air in, but the doctor said that he is breathing about 80% on his own. :) Plus, I got the numbers that they watch kidney function, and everything went down again on their own. We haven't seen the kidney doctors yet, but I bet they will postpone dialysis again! :) He's been opening his eyes and looking at us all morning. I think they are going to start trying to ween him off of his sedatives. This process all depends on how he reacts to the loss of his sedatives. We don't want him to get too agitated or be in pain, so this could be a slow process. That is alright, though. He has improved so much in the last couple days!!
Love,
Melissa
Saturday, January 23, 2010
Friday, January 22, 2010
REMISSION!!!
We just got the news that the PCR test came back negative!!! The hematologist's are confident enough that he is in remission that they do not feel like he needs to have a bone marrow biopsy!!! What a great day! Earlier today, when he came back from the tracheotomy, he opened his eyes. I started talking to him, and he actually smiled at me! This is the first response I've had from him in almost 6 weeks. It was so nice to see!
The kidney docs say that his numbers are still looking fine. He still does not need dialysis, and they'll reassess him tomorrow. :) This is the longest he's been without dialysis. The critical care team say that they're going to try to ween his sedatives this weekend, and hopefully get him off of the ventilator. Since he has the trache, they'll be able to disconnect and reconnect the vent as needed (ie possibly reconnect at night, or when he gets really tired).
WHAT A GREAT DAY! Thank God for all He has done for us!!!
Love,
Melissa
The kidney docs say that his numbers are still looking fine. He still does not need dialysis, and they'll reassess him tomorrow. :) This is the longest he's been without dialysis. The critical care team say that they're going to try to ween his sedatives this weekend, and hopefully get him off of the ventilator. Since he has the trache, they'll be able to disconnect and reconnect the vent as needed (ie possibly reconnect at night, or when he gets really tired).
WHAT A GREAT DAY! Thank God for all He has done for us!!!
Love,
Melissa
Trach went fine!
He's back in the room and looking good! It's so nice to see his face and mouth again! The ENT said that he had one of the best looking trachea's she's seen in a long time, and that everything went smoothly. : )
Still haven't seen any doctors.
Love,
Melissa
Still haven't seen any doctors.
Love,
Melissa
Tracheotomy Time
They wheeled Eric out of here around 7:30 this morning. His air under the skin had gone down quite a bit, so the ENTs were all happy. They said he should be back here around 8:30 and that it really takes more time to get him down there and ready, than to do the procedure.
He's still off of dialysis! I haven't seen his numbers yet, but I think they are still fine. They are slowly increasing, so he'll need dialysis again, but they are changing at a slower rate than before.
We haven't seen any other doctors, so I should have more to update later.
Love,
Melissa
He's still off of dialysis! I haven't seen his numbers yet, but I think they are still fine. They are slowly increasing, so he'll need dialysis again, but they are changing at a slower rate than before.
We haven't seen any other doctors, so I should have more to update later.
Love,
Melissa
Thursday, January 21, 2010
Thursday Midday
It's before noon and most of the doctors have stopped by! Normally, we'll be sitting in the room all day wondering when some of them will drop in. This is what they all had to say:
Critical Care:
Still see something in his lower right lung. It could be pneumonia, so they are switching around his antibiotics to target his lungs more. They took him off one broad range antibiotics yesterday and are switching the other today. They don't like keeping people on broad range antibiotics for too long, because it can cause species to become immune. They also said that it is possible that this area in his lung just looks worse because everything else is looking better. They think that his increase in oxygen requirement is due to his coughing up the mucus, which is good, too.
Kidneys:
He's been off the dialysis filter for 19 hours, and his numbers still look fine. They said he does not need dialysis today, but will continue to watch. They have a feeling that he'll still need it, but he's going in the right direction.
I already passed on the information from the Ear, Nose and Throat docs as well as the hematologist. All in all, is sounded good today! Hopefully he continues to rest. He's had his eyes open yesterday and today. It was nice. His heart rate and blood pressure did not increase, so I don't think he was agitated, but I do think he was listening. I'm hoping that his procedure goes well tomorrow, we get some good news, and that they can start waking him up in the near future.
Love,
Melissa
Critical Care:
Still see something in his lower right lung. It could be pneumonia, so they are switching around his antibiotics to target his lungs more. They took him off one broad range antibiotics yesterday and are switching the other today. They don't like keeping people on broad range antibiotics for too long, because it can cause species to become immune. They also said that it is possible that this area in his lung just looks worse because everything else is looking better. They think that his increase in oxygen requirement is due to his coughing up the mucus, which is good, too.
Kidneys:
He's been off the dialysis filter for 19 hours, and his numbers still look fine. They said he does not need dialysis today, but will continue to watch. They have a feeling that he'll still need it, but he's going in the right direction.
I already passed on the information from the Ear, Nose and Throat docs as well as the hematologist. All in all, is sounded good today! Hopefully he continues to rest. He's had his eyes open yesterday and today. It was nice. His heart rate and blood pressure did not increase, so I don't think he was agitated, but I do think he was listening. I'm hoping that his procedure goes well tomorrow, we get some good news, and that they can start waking him up in the near future.
Love,
Melissa
Still No News
We waited around all days yesterday to hear from the hematologist, only to find out that we might get the results on Friday. He did stop by today to explain a bit more about his thought process with the tests, though. He explained that there are 3 criteria for remission: 1) peripheral blood counts come back normal with no cancer cells (we already have that) 2) Bone marrow biopsy shows less than 5% blasts (immature cells), and we all have blasts 3) Molecular studies with the PCR test (which he sent out) comes back negative indicating a complete molecular remission. He thought that this test would come back sooner than it has, with the thought that if it came back negative, we can save Eric the discomfort of going through a biopsy. If it is negative, then we can stop giving him ATRA, and we are almost certain that he is in a remission. We'll then wait for him to get better to discuss maintenance therapy. If it comes back positive, he'll then schedule a bone marrow biopsy and continue to give ATRA. If the biopsy come back negative, then we wait for him to get stronger and discuss the issue of the risk of relapse. If the biopsy comes back positive, then we have a very difficult discussion on what to do, since he can't handle more chemo in his current state. He did say that the chances of the PCR test coming back positive at this stage of therapy for anybody is fairly high, but they don't normally request this test at this stage... meaning there isn't much data. Also, Eric had a very high white blood cell count initially, which statistically reduces his chance of remission. It's not really good news, but at least we understand more.
He seemed to have a good night. They had to go up on his oxygen settings again to 60%. I think he's been coughing a lot during the night and this morning and getting a lot of mucus out. I haven't seen the critical care docs yet, but I think this is good. He needs to get everything that has built up the past month out of his lungs to breath easier. The kidney docs decided yesterday to try him off of dialysis. His kidneys appeared to be functioning better, but they can only really tell when he is off of dialysis. So, they took him off around 4 pm yesterday, and 18 hrs later, his vitals still look good! His BUN increased as of 2 am this morning, but his creatinine (which is what they use to determine kidney function) is still in a good range. I'm anxious to hear what the kidney docs have to say this morning.
He's still scheduled for a tracheotomy tomorrow morning at 7:30, but the doctor is concerned about the air under his skin. He was saying that this could pose a risk of infection during the procedure, but he really needs to get the ventilator tubes out. He said he'd reassess him tomorrow morning, to make the final decision.
Pray hard for the PCR test to come back negative!!! He's looking so much better, and it would be so hard to hear that his leukemia might still be there.
Love,
Melissa
He seemed to have a good night. They had to go up on his oxygen settings again to 60%. I think he's been coughing a lot during the night and this morning and getting a lot of mucus out. I haven't seen the critical care docs yet, but I think this is good. He needs to get everything that has built up the past month out of his lungs to breath easier. The kidney docs decided yesterday to try him off of dialysis. His kidneys appeared to be functioning better, but they can only really tell when he is off of dialysis. So, they took him off around 4 pm yesterday, and 18 hrs later, his vitals still look good! His BUN increased as of 2 am this morning, but his creatinine (which is what they use to determine kidney function) is still in a good range. I'm anxious to hear what the kidney docs have to say this morning.
He's still scheduled for a tracheotomy tomorrow morning at 7:30, but the doctor is concerned about the air under his skin. He was saying that this could pose a risk of infection during the procedure, but he really needs to get the ventilator tubes out. He said he'd reassess him tomorrow morning, to make the final decision.
Pray hard for the PCR test to come back negative!!! He's looking so much better, and it would be so hard to hear that his leukemia might still be there.
Love,
Melissa
Wednesday, January 20, 2010
Tracheotomy Pushed Back to Friday
Good morning!
We found out late last night that the OR had to reschedule Eric's tracheotomy for Friday. They apparently were over booked, and Eric had some swelling in his chest and face (air underneath the skin from the ventilator), so he was the one they decided to push back. His swelling has gone down quite a bit by now. The doctors are still watching it just in case it indicates that another chest tube should be put in. Last night, they were also able to reduce his oxygen to 40% (from 50%) and keep the dialysis machine running. All of his vitals look nice and stable, too! I think they are going to try to start weening him off of his steroids and antibiotics today to see how he does. They're not going to completely eliminate all the meds, just try to get him to lower dosages.
A small concern is that his hemoglobin has been dropping the last few days. They were initially thinking that this drop was due to the problems we had with the dialysis machines. Every time they would clot or go down, he would lose blood in the tubing and the filter. This was happening fairly frequently, so the docs were not really concerned about the hemoglobin loss. However, they started a heparin drip yesterday to help with the dialysis, so they are being extra careful about watching for bleeds. Right now, he is getting a bag of red blood cells, so that should bring him back up to normal. It is so nice thinking that we went 11 days without getting any blood products. This is compared to the beginning when he would get as many bags transfused as they could in 24 hours.
Now, we are waiting for the doctors to make their rounds. We should hear some results today from the blood test for remission. I REALLY do not like our current hematologist's bedside manner, so I get nervous every time I think about it. Well, I guess I get nervous every time he walks into the room, but now with pending results, I'm a little more anxious.
Love,
Melissa
We found out late last night that the OR had to reschedule Eric's tracheotomy for Friday. They apparently were over booked, and Eric had some swelling in his chest and face (air underneath the skin from the ventilator), so he was the one they decided to push back. His swelling has gone down quite a bit by now. The doctors are still watching it just in case it indicates that another chest tube should be put in. Last night, they were also able to reduce his oxygen to 40% (from 50%) and keep the dialysis machine running. All of his vitals look nice and stable, too! I think they are going to try to start weening him off of his steroids and antibiotics today to see how he does. They're not going to completely eliminate all the meds, just try to get him to lower dosages.
A small concern is that his hemoglobin has been dropping the last few days. They were initially thinking that this drop was due to the problems we had with the dialysis machines. Every time they would clot or go down, he would lose blood in the tubing and the filter. This was happening fairly frequently, so the docs were not really concerned about the hemoglobin loss. However, they started a heparin drip yesterday to help with the dialysis, so they are being extra careful about watching for bleeds. Right now, he is getting a bag of red blood cells, so that should bring him back up to normal. It is so nice thinking that we went 11 days without getting any blood products. This is compared to the beginning when he would get as many bags transfused as they could in 24 hours.
Now, we are waiting for the doctors to make their rounds. We should hear some results today from the blood test for remission. I REALLY do not like our current hematologist's bedside manner, so I get nervous every time I think about it. Well, I guess I get nervous every time he walks into the room, but now with pending results, I'm a little more anxious.
Love,
Melissa
Tuesday, January 19, 2010
Waiting on 3rd Chest Tube
We thought earlier that they were going to place another chest tube on his left side (since there is a divider between the lobes of the lung), but since his pressures on his ventilator went back down, they decided to hold off on that. They did have to go up on his oxygen settings on the vent, though. They are now at 50%. They had just gotten the dialysis machine back up and running with the new dialysis catheter, but are now having the same problems with placement. Hopefully they can get it repositioned, since he really likes being on dialysis. Everything tends to be more stable when he is on that.
They have scheduled to do the tracheotomy tomorrow at 1 pm. They say that the procedure should take about an hour. I don't know if this includes travel time, which is probably more difficult than the actual procedure because of all of the things connected to him. I'm really glad that they got him in this early. It should be a lot more comfortable for him. I think they can size the tube a bit better, as well. We've been having slight sizing problems the whole time he's been here with the ventilation tubing. I'm not sure when they will start trying to ween him off of his sedatives again. It all depends on how he takes to the ventilator settings, his vital signs, and whether or not he has an infection. Time will tell.
I think that covers all of the new updates.
Love,
Melissa
They have scheduled to do the tracheotomy tomorrow at 1 pm. They say that the procedure should take about an hour. I don't know if this includes travel time, which is probably more difficult than the actual procedure because of all of the things connected to him. I'm really glad that they got him in this early. It should be a lot more comfortable for him. I think they can size the tube a bit better, as well. We've been having slight sizing problems the whole time he's been here with the ventilation tubing. I'm not sure when they will start trying to ween him off of his sedatives again. It all depends on how he takes to the ventilator settings, his vital signs, and whether or not he has an infection. Time will tell.
I think that covers all of the new updates.
Love,
Melissa
Dialysis equipment
Hi all,
Eric had a fairly restful night. He continues on dialysis, but with a few equipment problems. The doctors are putting him on blood thinner - quite a change from a month ago when we couldn't keep his blood thick enough. Blood thinner should make the dialysis process go smoother.
I've updated Eric's white blood cell and platelet counts again. The platelets continue to go up, which is good. Eric's white blood cells are a bit above normal probably due to infection. On a good note, his white blood cells have been dropping the past two days, back towards the normal range.
Love,
Sara
Eric had a fairly restful night. He continues on dialysis, but with a few equipment problems. The doctors are putting him on blood thinner - quite a change from a month ago when we couldn't keep his blood thick enough. Blood thinner should make the dialysis process go smoother.
I've updated Eric's white blood cell and platelet counts again. The platelets continue to go up, which is good. Eric's white blood cells are a bit above normal probably due to infection. On a good note, his white blood cells have been dropping the past two days, back towards the normal range.
Love,
Sara
Monday, January 18, 2010
Another Chest Tube
Hi Everyone,
Eric had a good night last night, which means I was able to get a good night's sleep. :) They were able to completely ween him off of the blood pressure medicine (which is wonderful!!) and lower the ventilator settings to 35%. This is lower than it has been since before Christmas! Another thing of note (at least to me) is that they replaced his central line yesterday to help prevent infection and replaced it with a COOK catheter! I've been waiting 5 weeks to see one of our products being used. I KNOW he'll get better now! :)
They also noticed another small pneumothorax on his right side this morning. They placed a chest tube on his right side, so he'll have matching scars. Both of the pneumothoraxes were pretty small and have stopped releasing air, so that is good. I'd rather have a small hole that a big one. They'll leave these tubes in until he comes off the ventilator, but no one is concerned about them. We're still waiting to hear from the Ear, Nose and Throat docs about scheduling a tracheotomy. I think everyone is in favor of doing this. It will be more comfortable for him, reduce the chance of scar tissue forming in this throat, and it should be easier to ween him off of the ventilator. Though he is getting close to being able to breathe on his own, it seems like his lungs are very sensitive to ANY changes in his body. This is basically what happened the other night. He had a fever, and it threw his whole body out of whack. It resulted in causing his lungs to not work correctly. I would hate to put him through the trauma of waking up with tubes down his throat only to have to put them back in immediately. With a trache tube, you can unhook the ventilator and hook it back up really easily. Once he is a bit stronger, they'll be able to take it out and let the hole heal.
As for other good news, his white blood cells went down again today to 19,000. This is still on the high side, but it might indicate that the earlier increase was in response to the infection/fever he had the other night, and not from the leukemia. These cells are all still normal, as well. This is all very reassuring to us, even if we have not heard results from the tests on remission.
Until later,
Melissa
Eric had a good night last night, which means I was able to get a good night's sleep. :) They were able to completely ween him off of the blood pressure medicine (which is wonderful!!) and lower the ventilator settings to 35%. This is lower than it has been since before Christmas! Another thing of note (at least to me) is that they replaced his central line yesterday to help prevent infection and replaced it with a COOK catheter! I've been waiting 5 weeks to see one of our products being used. I KNOW he'll get better now! :)
They also noticed another small pneumothorax on his right side this morning. They placed a chest tube on his right side, so he'll have matching scars. Both of the pneumothoraxes were pretty small and have stopped releasing air, so that is good. I'd rather have a small hole that a big one. They'll leave these tubes in until he comes off the ventilator, but no one is concerned about them. We're still waiting to hear from the Ear, Nose and Throat docs about scheduling a tracheotomy. I think everyone is in favor of doing this. It will be more comfortable for him, reduce the chance of scar tissue forming in this throat, and it should be easier to ween him off of the ventilator. Though he is getting close to being able to breathe on his own, it seems like his lungs are very sensitive to ANY changes in his body. This is basically what happened the other night. He had a fever, and it threw his whole body out of whack. It resulted in causing his lungs to not work correctly. I would hate to put him through the trauma of waking up with tubes down his throat only to have to put them back in immediately. With a trache tube, you can unhook the ventilator and hook it back up really easily. Once he is a bit stronger, they'll be able to take it out and let the hole heal.
As for other good news, his white blood cells went down again today to 19,000. This is still on the high side, but it might indicate that the earlier increase was in response to the infection/fever he had the other night, and not from the leukemia. These cells are all still normal, as well. This is all very reassuring to us, even if we have not heard results from the tests on remission.
Until later,
Melissa
Sunday, January 17, 2010
I'm tired of late night weekend excitement
1:30 AM Sunday morning
Hi,
Well, we started out the day with a desperate need for dialysis. Eric's BUN, potassium, and phosphate had increased very quickly overnight, so they did the fast dialysis on him to return him back to normal. He also had a temperature of 101.3F, so the doctors decided not to try to wake him up until he had stabilized a bit more.
We had a fairly quite day until around 7 pm. He started having trouble oxygenating, so we had to increase his ventilator settings to 50%. Then his temperature started spiking more until it reached 102.4 F. As this was happening, we couldn't slow down his heart rate and his blood pressure started bouncing around and trending down. They ended up stabilizing him with some more meds for both the heart and the blood pressure. Then he started having more trouble with the pressures in his lungs (the volume of air needed to ventilate and get oxygen in was resulting in very high pressures again... approx 40 cm H2O). All the while, we were dealing with a resident who we were not very confident in.
I basically argued with him for 20 min telling him how the ventilator works (he was somehow thinking that pressure and volume worked independently from one another regarding CO2, and would NOT let the subject drop). And then every time he would talk to us about a course of action, he would switch to a complete opposite plan mid sentence. Needless to say, both Sara and I were a bit on edge and feeling like we needed to second guess everything he did. End of story, 5 hours later he has relatively normal stats:
HR: approx 100 bpm (on the heart rate medicine)
Temp: 97.5 F BP: 127/57 (on the BP medicine)
O2 saturation: 97% (ventilator set at 60% O2 and 5 PEEP)
The only concerning thing is that his lungs are still requiring a lot of pressure. Hopefully now that everything else is more under control (and he's back on slow dialysis), they will slowly get better. They are also planning on starting ativan (the 3rd sedative, and longer lasting one) again.
I have a feeling that since his lungs are so susceptible to any change in his body that they may opt to do a tracheotomy. We'll see in the morning. I'm really hoping that things continue to settle down.
(Oh dear, that doctor just walked in again... I think we've determined that he just likes to talk, despite whether or not he knows what he is talking about)
Love, Melissa
P.S. Sara updated the graph below with the past 2 days blood count results. Click to enlarge.
Hi,
Well, we started out the day with a desperate need for dialysis. Eric's BUN, potassium, and phosphate had increased very quickly overnight, so they did the fast dialysis on him to return him back to normal. He also had a temperature of 101.3F, so the doctors decided not to try to wake him up until he had stabilized a bit more.
We had a fairly quite day until around 7 pm. He started having trouble oxygenating, so we had to increase his ventilator settings to 50%. Then his temperature started spiking more until it reached 102.4 F. As this was happening, we couldn't slow down his heart rate and his blood pressure started bouncing around and trending down. They ended up stabilizing him with some more meds for both the heart and the blood pressure. Then he started having more trouble with the pressures in his lungs (the volume of air needed to ventilate and get oxygen in was resulting in very high pressures again... approx 40 cm H2O). All the while, we were dealing with a resident who we were not very confident in.
I basically argued with him for 20 min telling him how the ventilator works (he was somehow thinking that pressure and volume worked independently from one another regarding CO2, and would NOT let the subject drop). And then every time he would talk to us about a course of action, he would switch to a complete opposite plan mid sentence. Needless to say, both Sara and I were a bit on edge and feeling like we needed to second guess everything he did. End of story, 5 hours later he has relatively normal stats:
HR: approx 100 bpm (on the heart rate medicine)
Temp: 97.5 F BP: 127/57 (on the BP medicine)
O2 saturation: 97% (ventilator set at 60% O2 and 5 PEEP)
The only concerning thing is that his lungs are still requiring a lot of pressure. Hopefully now that everything else is more under control (and he's back on slow dialysis), they will slowly get better. They are also planning on starting ativan (the 3rd sedative, and longer lasting one) again.
I have a feeling that since his lungs are so susceptible to any change in his body that they may opt to do a tracheotomy. We'll see in the morning. I'm really hoping that things continue to settle down.
(Oh dear, that doctor just walked in again... I think we've determined that he just likes to talk, despite whether or not he knows what he is talking about)
Love, Melissa
P.S. Sara updated the graph below with the past 2 days blood count results. Click to enlarge.
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