Sunday October 19.
It was a very weird day.
I arrived at the hospital, but had to wait a while before they would let me back to see her. In the waiting room, there was a whole family of people. I learned that their loved one was killed in a motorcycle accident the night before. They were all there to say goodbye before he was taken back for his organs to be harvested.
When I got in to see Mom, it was a mixed blessing. She was the most "herself" that she had been since before she was sick. Finally, the Dilaudid had warn off and she was back! But at the same time, she was very sick and in a lot of pain. So what do you think was the first thing she did? She didn't ask for a cup of coffee, or a cigarette (thank God!), or anything to eat. The first thing she did was to ask for more Dilaudid! I tried to tell her what the last week had been like, but she insisted that her pain was so intense that she wanted the Dilaudid. So at noon, she knew everything that had happened to her since roughly the night before. By 5:00, she couldn't remember what had happened that morning. The next day, she was gone again.
I learned later that during this period of clarity, Mom met with a social worker. It seems Mom knew what was coming, and knew I would need help. So she tried to make as many decisions as she could. She told the social worker what rehab centers she wanted to go to and asked her to help me if I needed to make hard decisions. It was over a week I think before I knew any of this.
It was a very weird day.
I arrived at the hospital, but had to wait a while before they would let me back to see her. In the waiting room, there was a whole family of people. I learned that their loved one was killed in a motorcycle accident the night before. They were all there to say goodbye before he was taken back for his organs to be harvested.
When I got in to see Mom, it was a mixed blessing. She was the most "herself" that she had been since before she was sick. Finally, the Dilaudid had warn off and she was back! But at the same time, she was very sick and in a lot of pain. So what do you think was the first thing she did? She didn't ask for a cup of coffee, or a cigarette (thank God!), or anything to eat. The first thing she did was to ask for more Dilaudid! I tried to tell her what the last week had been like, but she insisted that her pain was so intense that she wanted the Dilaudid. So at noon, she knew everything that had happened to her since roughly the night before. By 5:00, she couldn't remember what had happened that morning. The next day, she was gone again.
I learned later that during this period of clarity, Mom met with a social worker. It seems Mom knew what was coming, and knew I would need help. So she tried to make as many decisions as she could. She told the social worker what rehab centers she wanted to go to and asked her to help me if I needed to make hard decisions. It was over a week I think before I knew any of this.
She was not eating since she was still on the VPN (IV nutrition). She was spiking fevers, her blood pressure was dropping, her heart was racing (tachycardia) and in Afib (abnormal rhythm), and her breaths were shallower and faster (over 20 is considered high). None of which are good signs. In order to help keep up her BP, they were giving her tons (OK, maybe not literally) of saline. They also replaced her PICC line (that had been in her since 10/04) with a central line.
This might be a good point to mention her doctor situation. Once again, when she was admitted to ICU, there was debate over which doctors would be primary. This time, instead of being admitted to surgical critical care, she was admitted medically. So her primary doctors now were the Central Florida Pulmonary Group. What does this mean? The surgical critical care team has committed to:
- having the same attending surgeon on for 7 straight days,
- the attending is there all day with a staff of residents, and a resident there all night,
- daily family rounds at 4 pm for the family to get an update and ask all the questions you want, and
- being the doctors who look at the patient holistically to make decisions based on the big picture.
Without them, Mom had her surgeon (Gallagher), hospitalist (Mazer), Pulmonologist, Nephrologist, Cardiologist and Infectious Disease (Giron) doctors all making separate decisions. So if the Pulmonologist prescribed something when he came for his 10 minutes at 10 am, then the Nephrologist canceled that because it would hurt her kidneys when he came by in his 10 minutes at noon, and then infectious disease came by for his 10 minutes... you see where I am going with this?
It was Sunday that Grace decided to come down and help me out, to see for herself how things were. Her intention was to come down the following day. But the gods, or the Jet Blue website designers, conspired against that. So she would come on Tuesday morning.
Sunday was hard.
Monday October 20.
I worked all day. When I got to the hospital, Mom was swelling because of all the fluids they were giving her. We still didn't know what was happening, but her heart rhythm was back to normal. She was confused again. I decided at that time that I would take the next day off and go with Grace to the hospital after picking her up.
Also, since Wednesday prior I had been trying to get any of the doctors to call me. Because I typically visited at night, I missed all the doctors as they came to see her (except Dr Giron - he comes late). I looked at the chart since all the nurses kept telling me they were leaving post-it notes for the doctors. The notes were all in the inside flap of the chart. The nurse that night moved them to the next day's progress sheet so the doctor's couldn't miss it.
It was Sunday that Grace decided to come down and help me out, to see for herself how things were. Her intention was to come down the following day. But the gods, or the Jet Blue website designers, conspired against that. So she would come on Tuesday morning.
Sunday was hard.
Monday October 20.
I worked all day. When I got to the hospital, Mom was swelling because of all the fluids they were giving her. We still didn't know what was happening, but her heart rhythm was back to normal. She was confused again. I decided at that time that I would take the next day off and go with Grace to the hospital after picking her up.
Also, since Wednesday prior I had been trying to get any of the doctors to call me. Because I typically visited at night, I missed all the doctors as they came to see her (except Dr Giron - he comes late). I looked at the chart since all the nurses kept telling me they were leaving post-it notes for the doctors. The notes were all in the inside flap of the chart. The nurse that night moved them to the next day's progress sheet so the doctor's couldn't miss it.
Monday was harder.
Tuesday October 21.
I got a call from the surgical team that morning. My concern was that she hadn't been out of bed but once in the 10 days since the surgery and she wasn't eating yet. The doctor (Santa Ana) told me that none of that was too critical for her abdominal healing. She said that we had to focus now on what was making her ill and then we could worry about the intestines since all signs were fine there.
I picked up Grace and we went to the hospital. The kept us waiting for a few hours. Finally, one of the pulmonologists came out to give us an update. It was about 3:00. Mom was in danger of kidney failure. She was already so swollen do to the fluids to keep up her heart rate and BP, and the treatment to get the kidneys going was more fluid. So they decided to intubate her to protect her lungs. The doctor was very nice; he talked to us for a good 20 minutes trying to explain everything. But I don't remember what he said. I was devastated. Grace and I went to make phone calls. I called Chris. I don't even think I was making sense (so Grace called him back). Chris decided to come down. I think it was about 5:00 when we finally got to see her. Because of the intubation, they had her sedated, and she would stay that way until extubated.
I asked the nurse if any of the other doctors had been in. She told me Dr Mazer had come in, seen the note, and said "I am not calling her. I don't know her and it is against HIPAA Privacy." WHAT!!! As the proxy, he is required to call me. I was pissed to say the least. This is why I started to hate him.
Chris's flight arrived at about 9 pm. The visiting hours in the ICU are 10 - 6 and then 8 - 9. When we picked up Chris, we called and the nurse said that we could come by. Just as we got there, the nurse was taking her for a CAT scan. So once again, we waited to see her before we visited a little while.
At some point that day, probably right after learning Mazer wouldn't talk to me, we started talking to the nurse about her doctor situation. They did not understand why she wasn't under surgical critical care. Neither did we. So they started helping us to push for the change.
Tuesday was harder.
Wednesday October 22.
That morning, we began to develop our routine. Grace would wake up, call to check on Mom, run on the treadmill, make a protein shake and then get ready to go to the hospital. At this point, they said the preliminary culture results from Sunday were showing MRSA (Methicillin-resistant Staphylococcus aureus) and VRE (Vancomycin-resistant enterococcus). Both are not good. Her white cell count was about 22,000 (over 10,000 is high).
Mom was more bloated than before. Her ventilator was set to 6 breaths per minute, and her overall rate was 24. That meant she was doing 18 on her own. Soon after we got to the hospital, the pulmonologist showed up. Today's was different from the day before. He was calling her condition sepsis. Then Drs Gallagher and Santa Ana came by to do rounds. The three of them then spoke for a while. We weren't necessarily supposed to hear, but the colo-rectal surgeons did not think sepsis. The surgeons talked to us for a while about her condition. They told us with the ventilator it was only a matter of time before she got pnuemonia. They told us to expect things to get worse before they would get better.
Maybe 15 minutes after those doctors left, and we had gone back into the waiting room, the nurse called us back in. Dr Mazer was there. We went back and I introduced myself "Hi Dr Mazer, we met the Saturday following surgery. I'm her daughter and her proxy." He was sooooo not happy to see us. I think if he could have he would have flogged the nurse for calling us back in. He starts his conversation with us, "Well, I don't know what to tell you. Right now I have more questions than answers." First, did he think that would make us say 'oh, gee, then we won't bother you anymore'?? Second, that is not what you tell the family of a woman in ICU. So I said something like "OK, so why don't we go talk it and combine all our questions and answers." He was not amused. Then he tried to pull the HIPAA card, but realized that wasn't going to fly. Things I believe about Dr Mazer following this conversation: he is a misogynist, he is an egotistical ass, and he lends no value to my mom's care.
Mazer told us the cardiologist wanted to do a swan ganz catheter and an echocardiogram (ECHO). The catheter would put leads next to her heart and lungs to measure the pressure. The ECHO is a sonogram of the heart. Both are diagnostic tools that helps figure out what is wrong. She was bloated because her kidneys were putting out less than she was taking in.
We spent the next several hours visiting with Mom. When we left at 6 pm, they still had not done the swan or the ECHO. When we called at 11 pm to check on her, still nothing. It was very frustrating.
Wednesday was harder.
Thursday October 23
During Grace's morning call, we learned that overnight she had become acidotic, her breathing rate increased and her blood pressure dropped. Her white cell count was coming down - 13,000. They said that her urine output fell below the "adequate" level (30 cc's per hour) and would need dialysis. We got to the hospital as quickly as we could.
She was in the cath lab getting the swan. We did not know this for a few days, but the nurses did not think she was going to survive the procedure, so they escorted us to the cath lab waiting room. We met the cardiologist and signed the consent forms, and then waited. It wasn't too long. The cardiologist told us the swan was successfully placed. The pressure in her lungs was 80 (normal is 30) which meant severe pulmonary hypertension. This was most likely caused by the many years of smoking. They also told us she had an enlarged heart, but this was not something that we should worry about.
Once she was back in her ICU room, we went back to visit. The ventilator was now set to 18, and her total rate was 24. Now she was only doing 6 per minute on her own. The ventilator was now doing more than just helping her breathe. It was also helping with the acidosis, which is something the kidneys should be doing, but were unable to at the moment.
The nurse told us she did not have MRSA or VRE. The PICC line had been infected with both a Strep and a Staph strain of bacteria. They changed her antibiotic back to Vancomycin. While we were visiting, we noticed that the swan line was bleeding. It appeared the stitch used to hold down the catheter nicked the line. They had to take her back to the cath lab to redo it.
At about this same time, the Nephrologist came around. He took us to a consultation room to discuss the dialysis... sort of. He told us what dialysis was and what the risks were to the patient. And then he told us that he was not going to do it today. He had visited her at about 6 am and in his opinion, her dialysis odds were 90% for. Over the last 9 hours, her urine output increased to above adequate, so now he was more 50%/50%. He told us he would re-evaluate her in the morning. The things to watch were her Creatinin level (less than 1 is normal) and her Potassium (K). This was the first really good news of the week.
Once again we tried to move forward with the change to surgical critical care (SCC). The nurse (Dave - Dave is awesome) was actively helping with this. He called Dr Santa Ana, who then told him that she had asked SCC to take the case the day before, but the resident on that day declined the case. When the attending was told this, he was angry and told the resident "we never turn down a patient." It seemed like all doctors agreed to it, but it was still not official.
Thursday was mixed.
Friday October 24
Her heart rate was hovering near 100. Lung pressure was 55. Urine output (think she is going to kill me for not only tracking this, but posting it??) was about 40-50 cc's. Creatinin was high, but potassium was ok. No dialysis today. Still sedated to keep her comfortable with the tube in her mouth. Temp was about 98. Ventilator rate 24, total breaths 24.
We thought today that we would learn she was under SCC now, but that was not the case. Both Gallagher and Santa Ana were off that day, so now we had to deal with a brand new person. He thought we were asking for the change because we were upset with the CRC's care. We tried to reinforce that the reason for the change was to have someone there all the time who can evaluate her as she changes throughout the day. He finally signed off. YAY!
We visited all day. Once again the doctors warned that there would be set backs. She was still very, very swollen. But overall, she had no major events and was stable all day.
Also, we noticed an improvement in her care that day after the SCC switch. The attending saw notes that said her belly was rigid and distended. So they ordered an ultrasound to take a look at what was happening. They also changed up some of her meds that would still do the intended result without hurting her kidneys more. They also moved off VPN and onto feeding through the NG tube.
Friday was a good day.
Post Note
At the beginning of this blog I mentioned the family I met that first day. I have met many families in the ICU waiting room. Some had good results, and some did not. But that one family (sticking together, celebrating their loved one's life so soon after his sudden death) has stayed with me. I have thought of them every day and counted my blessings. As bad as it gets, we are not yet at that point, and that is something for which I am very thankful.
Tuesday October 21.
I got a call from the surgical team that morning. My concern was that she hadn't been out of bed but once in the 10 days since the surgery and she wasn't eating yet. The doctor (Santa Ana) told me that none of that was too critical for her abdominal healing. She said that we had to focus now on what was making her ill and then we could worry about the intestines since all signs were fine there.
I picked up Grace and we went to the hospital. The kept us waiting for a few hours. Finally, one of the pulmonologists came out to give us an update. It was about 3:00. Mom was in danger of kidney failure. She was already so swollen do to the fluids to keep up her heart rate and BP, and the treatment to get the kidneys going was more fluid. So they decided to intubate her to protect her lungs. The doctor was very nice; he talked to us for a good 20 minutes trying to explain everything. But I don't remember what he said. I was devastated. Grace and I went to make phone calls. I called Chris. I don't even think I was making sense (so Grace called him back). Chris decided to come down. I think it was about 5:00 when we finally got to see her. Because of the intubation, they had her sedated, and she would stay that way until extubated.
I asked the nurse if any of the other doctors had been in. She told me Dr Mazer had come in, seen the note, and said "I am not calling her. I don't know her and it is against HIPAA Privacy." WHAT!!! As the proxy, he is required to call me. I was pissed to say the least. This is why I started to hate him.
Chris's flight arrived at about 9 pm. The visiting hours in the ICU are 10 - 6 and then 8 - 9. When we picked up Chris, we called and the nurse said that we could come by. Just as we got there, the nurse was taking her for a CAT scan. So once again, we waited to see her before we visited a little while.
At some point that day, probably right after learning Mazer wouldn't talk to me, we started talking to the nurse about her doctor situation. They did not understand why she wasn't under surgical critical care. Neither did we. So they started helping us to push for the change.
Tuesday was harder.
Wednesday October 22.
That morning, we began to develop our routine. Grace would wake up, call to check on Mom, run on the treadmill, make a protein shake and then get ready to go to the hospital. At this point, they said the preliminary culture results from Sunday were showing MRSA (Methicillin-resistant Staphylococcus aureus) and VRE (Vancomycin-resistant enterococcus). Both are not good. Her white cell count was about 22,000 (over 10,000 is high).
Mom was more bloated than before. Her ventilator was set to 6 breaths per minute, and her overall rate was 24. That meant she was doing 18 on her own. Soon after we got to the hospital, the pulmonologist showed up. Today's was different from the day before. He was calling her condition sepsis. Then Drs Gallagher and Santa Ana came by to do rounds. The three of them then spoke for a while. We weren't necessarily supposed to hear, but the colo-rectal surgeons did not think sepsis. The surgeons talked to us for a while about her condition. They told us with the ventilator it was only a matter of time before she got pnuemonia. They told us to expect things to get worse before they would get better.
Maybe 15 minutes after those doctors left, and we had gone back into the waiting room, the nurse called us back in. Dr Mazer was there. We went back and I introduced myself "Hi Dr Mazer, we met the Saturday following surgery. I'm her daughter and her proxy." He was sooooo not happy to see us. I think if he could have he would have flogged the nurse for calling us back in. He starts his conversation with us, "Well, I don't know what to tell you. Right now I have more questions than answers." First, did he think that would make us say 'oh, gee, then we won't bother you anymore'?? Second, that is not what you tell the family of a woman in ICU. So I said something like "OK, so why don't we go talk it and combine all our questions and answers." He was not amused. Then he tried to pull the HIPAA card, but realized that wasn't going to fly. Things I believe about Dr Mazer following this conversation: he is a misogynist, he is an egotistical ass, and he lends no value to my mom's care.
Mazer told us the cardiologist wanted to do a swan ganz catheter and an echocardiogram (ECHO). The catheter would put leads next to her heart and lungs to measure the pressure. The ECHO is a sonogram of the heart. Both are diagnostic tools that helps figure out what is wrong. She was bloated because her kidneys were putting out less than she was taking in.
We spent the next several hours visiting with Mom. When we left at 6 pm, they still had not done the swan or the ECHO. When we called at 11 pm to check on her, still nothing. It was very frustrating.
Wednesday was harder.
Thursday October 23
During Grace's morning call, we learned that overnight she had become acidotic, her breathing rate increased and her blood pressure dropped. Her white cell count was coming down - 13,000. They said that her urine output fell below the "adequate" level (30 cc's per hour) and would need dialysis. We got to the hospital as quickly as we could.
She was in the cath lab getting the swan. We did not know this for a few days, but the nurses did not think she was going to survive the procedure, so they escorted us to the cath lab waiting room. We met the cardiologist and signed the consent forms, and then waited. It wasn't too long. The cardiologist told us the swan was successfully placed. The pressure in her lungs was 80 (normal is 30) which meant severe pulmonary hypertension. This was most likely caused by the many years of smoking. They also told us she had an enlarged heart, but this was not something that we should worry about.
Once she was back in her ICU room, we went back to visit. The ventilator was now set to 18, and her total rate was 24. Now she was only doing 6 per minute on her own. The ventilator was now doing more than just helping her breathe. It was also helping with the acidosis, which is something the kidneys should be doing, but were unable to at the moment.
The nurse told us she did not have MRSA or VRE. The PICC line had been infected with both a Strep and a Staph strain of bacteria. They changed her antibiotic back to Vancomycin. While we were visiting, we noticed that the swan line was bleeding. It appeared the stitch used to hold down the catheter nicked the line. They had to take her back to the cath lab to redo it.
At about this same time, the Nephrologist came around. He took us to a consultation room to discuss the dialysis... sort of. He told us what dialysis was and what the risks were to the patient. And then he told us that he was not going to do it today. He had visited her at about 6 am and in his opinion, her dialysis odds were 90% for. Over the last 9 hours, her urine output increased to above adequate, so now he was more 50%/50%. He told us he would re-evaluate her in the morning. The things to watch were her Creatinin level (less than 1 is normal) and her Potassium (K). This was the first really good news of the week.
Once again we tried to move forward with the change to surgical critical care (SCC). The nurse (Dave - Dave is awesome) was actively helping with this. He called Dr Santa Ana, who then told him that she had asked SCC to take the case the day before, but the resident on that day declined the case. When the attending was told this, he was angry and told the resident "we never turn down a patient." It seemed like all doctors agreed to it, but it was still not official.
Thursday was mixed.
Friday October 24
Her heart rate was hovering near 100. Lung pressure was 55. Urine output (think she is going to kill me for not only tracking this, but posting it??) was about 40-50 cc's. Creatinin was high, but potassium was ok. No dialysis today. Still sedated to keep her comfortable with the tube in her mouth. Temp was about 98. Ventilator rate 24, total breaths 24.
We thought today that we would learn she was under SCC now, but that was not the case. Both Gallagher and Santa Ana were off that day, so now we had to deal with a brand new person. He thought we were asking for the change because we were upset with the CRC's care. We tried to reinforce that the reason for the change was to have someone there all the time who can evaluate her as she changes throughout the day. He finally signed off. YAY!
We visited all day. Once again the doctors warned that there would be set backs. She was still very, very swollen. But overall, she had no major events and was stable all day.
Also, we noticed an improvement in her care that day after the SCC switch. The attending saw notes that said her belly was rigid and distended. So they ordered an ultrasound to take a look at what was happening. They also changed up some of her meds that would still do the intended result without hurting her kidneys more. They also moved off VPN and onto feeding through the NG tube.
Friday was a good day.
Post Note
At the beginning of this blog I mentioned the family I met that first day. I have met many families in the ICU waiting room. Some had good results, and some did not. But that one family (sticking together, celebrating their loved one's life so soon after his sudden death) has stayed with me. I have thought of them every day and counted my blessings. As bad as it gets, we are not yet at that point, and that is something for which I am very thankful.
.
The picture is from our trip to Alaska, on the Radiance of the Seas.
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