Monday’s x-ray is much improved. She had another bath and the doctor changed the dressing on her ECMO cannulas. They have added some new sedation, as her tolerance continues to go up. She slept well, especially after we sheltered her eyes from the bright lights. Today, she was allowed to wake up more and cough when she was suctioned. That way, they were able to get more mucus out of her lungs for her. She looks very good, and we hope to have a very uneventful overnight.
One of the crazy things about hospitals is that the doctors change every week, so the entire team that is taking care of her in the PICU is different than it was yesterday. We have just had one day with them so far, so we'll have to see if they have different goals for her. Thank goodness that the respiratory therapists who run the ECMO machine and the nurses don't change so dramatically - although they all have very different ways of doing things. It's hard to know what is best and if it really matters when they do things differently. We are just hoping for continued movement in the right direction overall, and we hope that all these things are working.
On the home front, my parents are still there taking care of Emma, and Andrew is going to try to spend some time at work tomorrow. Unfortunately, Emma has come down with a bit of a cold/flu, so I haven't seen her since Saturday. But, she seems to be feeling better and told me that she was going to school tomorrow.
Just one last thing -- the ECMO machine uses a lot of blood products, so we are asking everyone who can to give blood back into the system. You don't have to do it here, just go anywhere and give a little back into the blood bank if you can. Thank you!
Monday, September 17, 2007
The Weekend of Baby Steps
September 15th:
On Saturday morning, she finally had an x-ray that looked better than the previous one, but we know that it is only part of the bigger picture. By Saturday, most of our family had come to see Samantha and help us get through this time. Everyone has been wonderfully supportive and there for us when we needed something. Seeing everyone helped Samantha as well, as she stabilized well on Saturday and had both a good day with Andrew and a good night with me. Emma has been a big help as well, and she is doing well.
September 16th:
Sunday was a good day. Samantha and Andrew watched some football, and I got to sleep for a little longer than usual. Samantha had a very quiet day, which is always good. Her morning x-ray was not as good as the previous one, but that is going to happen. She is also looking much better, so that is just as important. We were even able to give her a bath and get her skin cleaned up and her IV dressings changed. Additionally, she has been able to tolerate some changes to the ECMO that the doctors wanted. They also seem to have her blood pressure where they want it and they have allowed her temperature to come back up to normal. She is starting to look more pink now.
On Saturday morning, she finally had an x-ray that looked better than the previous one, but we know that it is only part of the bigger picture. By Saturday, most of our family had come to see Samantha and help us get through this time. Everyone has been wonderfully supportive and there for us when we needed something. Seeing everyone helped Samantha as well, as she stabilized well on Saturday and had both a good day with Andrew and a good night with me. Emma has been a big help as well, and she is doing well.
September 16th:
Sunday was a good day. Samantha and Andrew watched some football, and I got to sleep for a little longer than usual. Samantha had a very quiet day, which is always good. Her morning x-ray was not as good as the previous one, but that is going to happen. She is also looking much better, so that is just as important. We were even able to give her a bath and get her skin cleaned up and her IV dressings changed. Additionally, she has been able to tolerate some changes to the ECMO that the doctors wanted. They also seem to have her blood pressure where they want it and they have allowed her temperature to come back up to normal. She is starting to look more pink now.
The long version, part two: 9/6 - 9/14
Here is part two of Samantha's current journey. Again, this has a lot of detail, most of which is medical in nature. It stops a couple of days ago, when she was being stabilized in the PICU.
September 6th:
Thursday morning, we started to get back into a regular routine. Andrew went to work, Emma went to school, and Samantha stopped in to see her new classmates. She spent a few minutes with them, learning their names and answering their questions about where she had been and what had happened. In all, it was a good day and the hospital had also determined her correct dose of vancomycin, so we restarted that antibiotic along with continuing her ceftazidime.
September 7th:
Friday was another good day. Emma and Samantha both went to school, and I sat in Samantha’s classroom just to make sure that she didn’t have any trouble with her IV. At lunchtime, she and I went to Red Lobster and then we picked up Emma after school. That evening, we went over to Holy Cross for them to run tests for her kidney function and to see what the vancomycin level was in her body. Later that night, we got the results, her kidneys had started to get worse, and the vancomycin level was almost two times what it should have been. We called every doctor, and they all agreed that we should stop that drug and replace it with one called Bactrim. She then started that drug on Saturday.
September 8th:
On Saturday, we just relaxed and tried to get our home back in order. But, that evening, while we were picking up some dinner, and after another blood draw at Holy Cross, Samantha started to have a little fever, about 100. We called the doctor, gave her some Tylenol, and it seemed to go away. She slept well that night, and we continued all her antibiotics.
September 9th:
At some point on Sunday, Samantha’s fever started to come back again and she was very tired. By the afternoon, her fever was about 100 again, and she was sleeping a lot. As the day went on, her fever climbed slowly, so that by bedtime, it was 101. We kept checking on her, and soon she seemed to have more and more labored breathing. By 10:00 pm, her fever hit 102, and she was having obvious difficulty catching her breath. We called the doctor and they suggested that we head to the hospital. We decided to come back to Johns Hopkins, so that she could get a high level of care if it ended up being necessary. We called Jeff and he came over to stay with Emma while Andrew and I took Samantha to the hospital.
September 10th:
Very early on Monday morning, about 1:30 am, we arrived at Johns Hopkins and were admitted once again. Samantha even began to need oxygen and was placed on a nasal cannula. We finally got into a room around 6:30 am, and Samantha was able to get some sleep. She was sleeping relatively comfortably throughout the day, as we were waiting for them to be able to do another bronchoscopy. This time, they were going to biopsy some of the tissue to look for signs of rejection, as well as do another BAL to see if any new germs were growing. (None had ever shown up in the previous culture.) That afternoon, we had a new team of doctors come to see Samantha because, as in most hospitals, it was a new group that worked that week.
And, unfortunately, the difficulties that we had with the administrators during her last admission found us again. The new team of pulmonologists came and asked how she was and if there had been any change since the night. I told them what I had seen – mostly that she was just so very tired.
At that point, the attending doctor chose to speak very harshly to me about what he said was my refusal to allow treatments for my child and my intrusion into her care. Having never met this person before, I was taken aback and was very angry at some of his accusations. He was unable to tell me who had given him this information, and I told him that he needed to understand that I was not going to be pushed out of her care by anyone, least of all a doctor who had never met us before and made false accusations based on “secret” information. This was obviously not a good way to begin our stay. Even more unfortunate is that all of our interactions with this doctor were colored by this beginning, and he became defensive and insulting whenever we asked questions or wanted to discuss his recommendations.
Samantha went in for her bronchoscopy that afternoon, and they said that they had been able to get a good biopsy but that they had found a great deal of mucus in her lungs – so much so that it was difficult to keep a bronchoscope down without it getting quickly covered and stuck. Dr. Mogayzel felt like what he saw looked more like infection than rejection, so we were relieved. He also recommended that we do more aggressive chest physical therapy and breathing treatments in order to help her move the mucus out of her lungs. Samantha did well recovering and we went back up to her room. By this time, my parents had arrived and had brought Emma to the hospital with Andrew so she could see her sister.
We spent the rest of the day and night trying to help Samantha to cough up the mucus in her lungs. She was able to bring a lot of the stuff up, but her need for oxygen did not decrease. Meanwhile, the doctors from Infectious Disease came to talk to us about a new course of treatment. They recommended that we restart the vancomycin, with regular monitoring, continue her ceftazadime and bactrim, restart azithromycin, add linezolid, and add an antifungal drug. They were working to make sure that the drugs were covering every possible type of infection, with the exception of viral. Unlike a bacterial infection, to treat a viral infection, you have to be able to identify the virus before it can be fought with drugs. But all indications were that this was bacterial, so they wanted to through everything at it, including the kitchen sink. All her new medicines were started that night.
September 11th:
On Tuesday, Samantha was again very tired, and she slept a lot. The respiratory therapists came in often to administer breathing treatments and help her move the mucus up out of her lungs using physical therapy on her chest. Andrew brought Emma up to visit for a little bit along with my parents. Samantha was getting very good at coughing up mucus, but by the evening, she was having some trouble with gagging and throwing up. Her medicines were also making her stomach hurt, because she hadn’t eaten much since Saturday. That night, she slept fitfully, often waking up to cough and spit up mucus.
September 12th:
By Wednesday morning, Samantha was having a lot of trouble catching her breath. She was also coughing up pink phlegm and having dry heaves. Soon, she needed more help than her nasal cannula, so they got her ready for BiPAP – a system that covered her nose and pushed in air at a constant pressure to help her keep her lungs open. We needed to come up to the PICU in order to use that system, so they brought us upstairs. Fortunately, Andrew came up early, so we were all able to go up to the PICU together.
Once we arrived, Samantha was taken into a room to be placed with a BiPAP system. She was so scared and kept screaming for me, so they finally came and let me help to calm her down. They placed the mask on and took an x-ray. The mask did not fit well, and they decided to put a full nose and mouth mask on instead. Samantha was very uncomfortable, and she was still having difficulty getting enough oxygen in her body. The doctors came in shortly and told us that having looked at her x-ray, they felt she needed to be on a respirator in order to continue. We told them to go ahead. I stood at the corner of the room, and Andrew went downstairs to call both grandparents and update them.
As they started to put the tube down her throat, a great deal of fluid came up and suddenly her heart arrested. I watched as they began chest compressions, gave her a lot of drugs to restart her heart, and even shocked her with paddles 2 or 3 times. I also asked someone to find Andrew and get him back up there. They finally reached him on the phone and he ran back to the room. We watched together as they did chest compressions for over 30 minutes, and the doctors let us know that she needed to go on a form of heart and lung bypass called ECMO. We told them to do what they needed to do. They finally got her on the machine, and were also able to start her on a ventilator. They moved her into the ECMO room, where there was another child on ECMO. They keep them together because of the need for so much support and vigilance on the system. We decided that we would not leave her side, even though there was no room for us to sit or lay down next to her bed. The PICU staff helped us to identify a place where I could sleep and shower during the day while Andrew stayed with Samantha. I would be staying up with her all night.
September 13th, 14th:
On Thursday and Friday, the doctors continued to work to stabilize Samantha on ECMO. She is taking more antibiotics, so that she has double coverage on all of the possible germs. She gets medicine to help control her blood pressure, to replace electrolytes, to add fat and calories to her body, to help her gastric functions, to adjust her glucose levels, to continue to suppress her immune system even while she tries to heal, and to sedate her and make her comfortable. She is also on dialysis through the ECMO machine so that her kidneys are not being too overtaxed. Another part of her treatment is to decrease her body temperature to about 92 in order to protect her brain post cardiac arrest. So, she’s cold, but that is good for now.
There are a lot of goals that the doctors are trying to balance. She needs to be on low ventilator settings so that her lungs aren’t damaged by the help, and the bypass needs to do the right amount of work to let her rest while she heals. We have learned and are learning that this is a very long process and there are a lot of risks. We are trying hard to not focus on one number or one x-ray or even one range of settings. The important thing is to look at how she is doing over time, and hopefully, the trend is that she is getting better overall. Individual setbacks may occur, but as long as the overall picture continues to improve, then we have a reason for hope.
September 6th:
Thursday morning, we started to get back into a regular routine. Andrew went to work, Emma went to school, and Samantha stopped in to see her new classmates. She spent a few minutes with them, learning their names and answering their questions about where she had been and what had happened. In all, it was a good day and the hospital had also determined her correct dose of vancomycin, so we restarted that antibiotic along with continuing her ceftazidime.
September 7th:
Friday was another good day. Emma and Samantha both went to school, and I sat in Samantha’s classroom just to make sure that she didn’t have any trouble with her IV. At lunchtime, she and I went to Red Lobster and then we picked up Emma after school. That evening, we went over to Holy Cross for them to run tests for her kidney function and to see what the vancomycin level was in her body. Later that night, we got the results, her kidneys had started to get worse, and the vancomycin level was almost two times what it should have been. We called every doctor, and they all agreed that we should stop that drug and replace it with one called Bactrim. She then started that drug on Saturday.
September 8th:
On Saturday, we just relaxed and tried to get our home back in order. But, that evening, while we were picking up some dinner, and after another blood draw at Holy Cross, Samantha started to have a little fever, about 100. We called the doctor, gave her some Tylenol, and it seemed to go away. She slept well that night, and we continued all her antibiotics.
September 9th:
At some point on Sunday, Samantha’s fever started to come back again and she was very tired. By the afternoon, her fever was about 100 again, and she was sleeping a lot. As the day went on, her fever climbed slowly, so that by bedtime, it was 101. We kept checking on her, and soon she seemed to have more and more labored breathing. By 10:00 pm, her fever hit 102, and she was having obvious difficulty catching her breath. We called the doctor and they suggested that we head to the hospital. We decided to come back to Johns Hopkins, so that she could get a high level of care if it ended up being necessary. We called Jeff and he came over to stay with Emma while Andrew and I took Samantha to the hospital.
September 10th:
Very early on Monday morning, about 1:30 am, we arrived at Johns Hopkins and were admitted once again. Samantha even began to need oxygen and was placed on a nasal cannula. We finally got into a room around 6:30 am, and Samantha was able to get some sleep. She was sleeping relatively comfortably throughout the day, as we were waiting for them to be able to do another bronchoscopy. This time, they were going to biopsy some of the tissue to look for signs of rejection, as well as do another BAL to see if any new germs were growing. (None had ever shown up in the previous culture.) That afternoon, we had a new team of doctors come to see Samantha because, as in most hospitals, it was a new group that worked that week.
And, unfortunately, the difficulties that we had with the administrators during her last admission found us again. The new team of pulmonologists came and asked how she was and if there had been any change since the night. I told them what I had seen – mostly that she was just so very tired.
At that point, the attending doctor chose to speak very harshly to me about what he said was my refusal to allow treatments for my child and my intrusion into her care. Having never met this person before, I was taken aback and was very angry at some of his accusations. He was unable to tell me who had given him this information, and I told him that he needed to understand that I was not going to be pushed out of her care by anyone, least of all a doctor who had never met us before and made false accusations based on “secret” information. This was obviously not a good way to begin our stay. Even more unfortunate is that all of our interactions with this doctor were colored by this beginning, and he became defensive and insulting whenever we asked questions or wanted to discuss his recommendations.
Samantha went in for her bronchoscopy that afternoon, and they said that they had been able to get a good biopsy but that they had found a great deal of mucus in her lungs – so much so that it was difficult to keep a bronchoscope down without it getting quickly covered and stuck. Dr. Mogayzel felt like what he saw looked more like infection than rejection, so we were relieved. He also recommended that we do more aggressive chest physical therapy and breathing treatments in order to help her move the mucus out of her lungs. Samantha did well recovering and we went back up to her room. By this time, my parents had arrived and had brought Emma to the hospital with Andrew so she could see her sister.
We spent the rest of the day and night trying to help Samantha to cough up the mucus in her lungs. She was able to bring a lot of the stuff up, but her need for oxygen did not decrease. Meanwhile, the doctors from Infectious Disease came to talk to us about a new course of treatment. They recommended that we restart the vancomycin, with regular monitoring, continue her ceftazadime and bactrim, restart azithromycin, add linezolid, and add an antifungal drug. They were working to make sure that the drugs were covering every possible type of infection, with the exception of viral. Unlike a bacterial infection, to treat a viral infection, you have to be able to identify the virus before it can be fought with drugs. But all indications were that this was bacterial, so they wanted to through everything at it, including the kitchen sink. All her new medicines were started that night.
September 11th:
On Tuesday, Samantha was again very tired, and she slept a lot. The respiratory therapists came in often to administer breathing treatments and help her move the mucus up out of her lungs using physical therapy on her chest. Andrew brought Emma up to visit for a little bit along with my parents. Samantha was getting very good at coughing up mucus, but by the evening, she was having some trouble with gagging and throwing up. Her medicines were also making her stomach hurt, because she hadn’t eaten much since Saturday. That night, she slept fitfully, often waking up to cough and spit up mucus.
September 12th:
By Wednesday morning, Samantha was having a lot of trouble catching her breath. She was also coughing up pink phlegm and having dry heaves. Soon, she needed more help than her nasal cannula, so they got her ready for BiPAP – a system that covered her nose and pushed in air at a constant pressure to help her keep her lungs open. We needed to come up to the PICU in order to use that system, so they brought us upstairs. Fortunately, Andrew came up early, so we were all able to go up to the PICU together.
Once we arrived, Samantha was taken into a room to be placed with a BiPAP system. She was so scared and kept screaming for me, so they finally came and let me help to calm her down. They placed the mask on and took an x-ray. The mask did not fit well, and they decided to put a full nose and mouth mask on instead. Samantha was very uncomfortable, and she was still having difficulty getting enough oxygen in her body. The doctors came in shortly and told us that having looked at her x-ray, they felt she needed to be on a respirator in order to continue. We told them to go ahead. I stood at the corner of the room, and Andrew went downstairs to call both grandparents and update them.
As they started to put the tube down her throat, a great deal of fluid came up and suddenly her heart arrested. I watched as they began chest compressions, gave her a lot of drugs to restart her heart, and even shocked her with paddles 2 or 3 times. I also asked someone to find Andrew and get him back up there. They finally reached him on the phone and he ran back to the room. We watched together as they did chest compressions for over 30 minutes, and the doctors let us know that she needed to go on a form of heart and lung bypass called ECMO. We told them to do what they needed to do. They finally got her on the machine, and were also able to start her on a ventilator. They moved her into the ECMO room, where there was another child on ECMO. They keep them together because of the need for so much support and vigilance on the system. We decided that we would not leave her side, even though there was no room for us to sit or lay down next to her bed. The PICU staff helped us to identify a place where I could sleep and shower during the day while Andrew stayed with Samantha. I would be staying up with her all night.
September 13th, 14th:
On Thursday and Friday, the doctors continued to work to stabilize Samantha on ECMO. She is taking more antibiotics, so that she has double coverage on all of the possible germs. She gets medicine to help control her blood pressure, to replace electrolytes, to add fat and calories to her body, to help her gastric functions, to adjust her glucose levels, to continue to suppress her immune system even while she tries to heal, and to sedate her and make her comfortable. She is also on dialysis through the ECMO machine so that her kidneys are not being too overtaxed. Another part of her treatment is to decrease her body temperature to about 92 in order to protect her brain post cardiac arrest. So, she’s cold, but that is good for now.
There are a lot of goals that the doctors are trying to balance. She needs to be on low ventilator settings so that her lungs aren’t damaged by the help, and the bypass needs to do the right amount of work to let her rest while she heals. We have learned and are learning that this is a very long process and there are a lot of risks. We are trying hard to not focus on one number or one x-ray or even one range of settings. The important thing is to look at how she is doing over time, and hopefully, the trend is that she is getting better overall. Individual setbacks may occur, but as long as the overall picture continues to improve, then we have a reason for hope.
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